OFFICE OF DEVELOPMENTAL PROGRAMS

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OFFICE OF DEVELOPMENTAL PROGRAMS

• BUREAU OF AUTISM SERVICES

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BASIC AUTISM INFORMATION

• 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), Tourettes
  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.

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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.

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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.

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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

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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.

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OUR DRIVING FORCE

• 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.

• 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.

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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.

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OUR GOALS (cont)

• 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.

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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.

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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)

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BUREAU OF AUTISM SERVICESCentral and Regional
OfficesClinical Operational Staff Located in
all Three Regions
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WHAT WEVE DONE Census 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 Pennsylvanias 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

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WHAT WEVE 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 Pennsylvanias 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.

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WHAT WEVE DONE DIAGNOSIS AND ASSESSMENT

• Dr. Susan Levy of Childrens 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.

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WHAT WEVE 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)

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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 Masters
Ph.D.-level students. Additional Training is
being planned. Second training has been
rescheduled
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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

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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_at_state.pa.us

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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

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PROMOTING BEST PRACTICES

• 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

• 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.

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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

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PROMOTING BEST PRACTICES

• 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.

• 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).

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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

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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.

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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.  

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SERVICES FOR ADULTS AND THEIR FAMILIES LIVING
WITH ASD

• AUTISM CAPITATED ASSISTANCE PROGRAM (ACAP)
• AUTISM WAIVER

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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.

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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 individuals
  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.

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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.

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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

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Bureau of Autism ServicesNina Wall-Cote,
Director

• Email us at
• DPW-AutismOffice_at_state.pa.us
• Visit our Website www.autisminpa.org
• Contact us at 717-265-7760 or
• Toll Free in Pennsylvania at
• 866-497-6898