Board of DirectorsAlameda County Developmental Disabilities Planning

1
Board of Directors--Alameda County Developmental
Disabilities Planning Advisory
CouncilNovember 14, 2007

• The Autism Commissions Report to the Governor
  Legislature
• Findings Recommendations
• supporting individuals with autism their
  families forging new directions for real
  change
• Web site senweb03.senate.ca.gov
• Louis Vismara M.D.
• Policy Consultant, Senator Don Perata
• President Pro Tempore
• Ph [phone]
• Fax [phone]
• Louis.Vismara_at_sen.ca.gov

2
Autism Spectrum Disorders A Public Health
CrisisCalifornia Statistics on ASD

• Dept. of Developmental Services Regional
  Centers
• Caseload increased 634 from 1987 to 2002
• Currently there are almost 35,000 consumers with
  ASD
• 84 are under the age of 22 years
• Annual net increase of 3,200 cases of ASD
• ASD now represents almost two-thirds of all new
  cases
• Currently there are more cases of ASD than of
  Cerebral Palsy
• Regional Centers probably serve only about 20 of
  ASD
• School districts
• Almost 35,000 students with ASD in special
  education
• Most districts have doubled ASD students in just
  the past 4 years
• Proportion of students with ASD in special
  education has increased gt400 in past 9years
• There has been gt1000 increase in ASD students
  K-12 during past 12 years

3
The California Legislative Blue Ribbon Commission
on Autism

• Legislation Senate Concurrent Resolution 51
  (Sen. Perata) was enacted 2005
• SCR 51 passed unanimously with bipartisan
  support
• Autism Commission Goals identify close gaps
• Early identification intervention of ASD
• Education continuous treatment of
  childrenadolescents, transitional youth adults
  with ASD
• The aging out of children
• Report to Gov. Legislature by Sept. 30, 2007
• Legislation (SCR 55) passed this year will
  extend Commission to Nov. 2008
• Commissions Three Task Forces
• ?Identify existing problems gaps
• ?Review potential strategies
• ?Provide specific recommendations
• Task Forces Reports to Commission (March 1,
  2007)
• Community Townhall Meetings
• Bay Area (four)

4
The California Legislative Blue Ribbon Commission
on Autismsupporting individuals with autism
their families forging new directions for real
change
5
The California Legislative Blue Ribbon Commission
on AutismFactors Considerations

• Consumers, parents, families as well as
  individuals working in the field must be
  involved
• The state should have a clear role and
  responsibility to address these issues
• The solutions should be clearly identified
• The solutions should be reasonable feasible to
  implement.
• The solutions should have outcomes that can be
  monitored measured
• The solutions should have the potential to effect
  broad systems change
•  

6

• The California Legislative Blue Ribbon Commission
  on Autism
• Early Identification Intervention Building
  Models of Integrated, Seamless
• Comprehensive Services
• Findings
• In many children, ASD is identified late in
  childhood or missed altogether.
• Many children diagnosed with ASD do not receive
  timely and appropriate intensive interventions.
• Many children in underserved communities are
  often diagnosed later than other children and
  are less likely to access early interventions.
• Existing community systems of care often do not
  collaborate
• The medical system is overwhelmed, underfunded,
  and ill-prepared
• Families often face a crisis when children with
  ASD reach age three
• Goal
• Ensure the early identification and access to
  seamless systems of effective intervention for
  children with ASD from birth to kindergarten.
  Policy Recommendations

7
The California Legislative Blue Ribbon
Commission on Autism

• Early Identifications Intervention Policy
  Recommendations

• 1. Establish a demonstration project at multiple
  sites
• a. Expand early identification programs (focus
  on socio-economically distressed rural areas)
• b. Ensure access to intervention
• c. Improve communication and sharing of
  information
• d. Provide supports to families and caregivers
• e. Improve communication between the medical
  home and families.
• f. Expand resources training for health care
  professionals
• g. Provide a seamless system for service
  delivery between regional centers and school
  districts
• 2. Enact state legislation to expand
  developmental screening, including for ASD, for
  children from birth to five years of age

8
The California Legislative Blue Ribbon Commission
on Autism

• Ensuring Appropriate and Equitable Coverage for
  ASD by Private Health
• Plans Insurers

• Findings
• Coverage of health care, behavioral, and
  psychotherapeutic services for ASD is limited,
  inconsistent or excluded altogether
• The roles and responsibilities of health plans
  and insurers for ASD services are not well
  defined
• Frequently there is lack of consensus about the
  medical necessity of services for individuals
  with ASD
• When health plans and insurers contract (carve
  out) behavioral health services, there is often
  fragmentation and/or denial of services, leaving
  families with lost time and no services
• Health plans and insurers do not consistently
  provide access to professionals with adequate
  training and expertise in ASD
• Goal
• Ensure appropriate and equitable coverage by
  private health plans and insurers for the
  diagnosis and medically necessary treatment of
  ASD, as intended by Californias mental health
  parity law.

9
The California Legislative Blue Ribbon Commission
on Autism

• Policy Recommendations for ASD Coverage by
  Private Health Plans Insurers

• The state of California should adopt policies and
  practices to ensure the following
• a. That all health plans and insurers treat ASD
  as a brain-based medical disorder
• b. That all health plans and insurers provide a
  full range of services for ASD
• c. That all health plans and insurers may not
  use the diagnosis of ASD as an exclusionary
  clause
• 2. The state of California should establish an
  Autism Professional Advisory Council for the
  purpose of adopting evidence-based best
  practices guidelines
• 3. Once these guidelines are adopted, California
  should adopt policies and procedures to ensure
  that all health plans and insurers comply with
  those guidelines

10
The California Legislative Blue Ribbon Commission
on Autism

• The ASD Public Health Crisis Improving Access to
  Services
• Navigating Complex Systems of Care
• Findings
• ASD is a public health problem, yet the state
  lacks a comprehensive public health initiative
  and infrastructure
• Many Californians are not adequately informed
  about ASD
• Individuals with ASD and their families have
  difficulty in accessing navigating programs
  and services
• Programs and services that serve individuals with
  ASD typically lack appropriate data management
  and information sharing systems
• Families in underserved populations face
  tremendous challenges in accessing services
• Goal Provide all Californians with information
  about ASD so they can better understand the need
  for early detection and treatment and how to
  obtain programs and services. In addition,
  establish a public health information system and
  infrastructure to improve access to and
  navigation of programs and services for ASD

11
The California Legislative Blue Ribbon Commission
on Autism

• Policy Recommendations on the ASD Public Health
  Crisis
• Require the state of California to establish an
  ASD Public Health Initiative in order to promote
  greater public awareness and knowledge of ASD
• Require the California Department of Public
  Health to establish a statewide system,
  infrastructure, and Office of ASD to assist
  consumers in accessing and navigating programs
  and services for ASD
• Require the California Department of Public
  Health to establish a statewide voluntary
  registry for individuals with ASD
• The state of California should fund training,
  technical assistance, and other support to
  community-based resource centers so they can
  inform, train, assist, and empower families,
  especially those in underserved communities

Next Steps
12
The California Legislative Blue Ribbon
Commission on AutismPreparing for the Education
of Children with ASD

• Findings
• There is a compelling need to increase the number
  of well trained teachers allied professionals
• Current practices must be reviewed to ensure that
  teacher training and preparation are appropriate
  
• There are an insufficient number of well-trained
  paraprofessionals
• Teachers report that they need more resources and
  supports
• School administrators and principals require
  additional training
• Teachers need expanded opportunities for
  preservice in-service training
• Goal
• Ensure that there are an adequate number of
  appropriately trained school personnel to provide
  educational services to meet the special needs of
  children with ASD.

13

• The California Legislative Blue Ribbon Commission
  on Autism
• Policy Recommendations on Preparing for the
  Education of Children
• with ASD
• Establish an alternative credentialing program
  with specialized training to accomplish the
  following
• a. Increase the number of well trained and
  qualified teachers
• b. Prepare teachers with the specialized
  competencies
• Direct the CDE to establish an ASD
  Multidisciplinary Educational Training Team
  Program to accomplish the following
• a. Establish the professional competencies,
  resources, curricula other criteria that should
  be integrated with each program
• b. Establish strategies, trainings, and other
  services to provide necessary resources and
  supports for school-based personnel
• c. Promote collaboration in the sharing of
  information between local education agencies and
  other institutions providers
• Establish a model program to provide specialized
  training career-ladder opportunities for
  paraprofessionals
• Increase funding to local education agencies for
  mandatory ASD-related training of school-based
  personnel

14

• The California Legislative Blue Ribbon Commission
  on Autism
• Resolving Service Disputes Effectively and
  Equitably
• Findings
• Consumers families may disagree about the
  necessity for services and the type and quantity
  of services
• The current system that addresses conflict
  resolution is variable across the state
• Some disputes that are appealed to the state for
  resolution can be very costly, frustrating, and
  time consuming they may create delays and also
  divert much-needed resources from services
• The resolutions of some disputes through
  mediation and state administrative hearings are
  perceived to be inequitable.
• There is inadequate information about the range
  of disputes that are resolved at the state and
  local levels
• There is inadequate information about the range
  of possible barriers to consumers and families
• Goal
• Ensure that consistent and effective standards
  and practices are used by local education
  agencies and regional centers to resolve service
  disputes in a timely, equitable, and
  cost-effective manner.
• Policy Recommendations
• Expand the development and broad implementation
  of effective models for dispute resolution
• Provide a comprehensive independent review of
  the process for resolving disputes at the state
  and local levels
• Collect information from regional centers and
  local education agencies about their legal and
  other costs for formal dispute resolution and
  litigation involving persons with ASD.

15
The California Legislative Blue Ribbon Commission
on Autism

• Designing New Employment and Housing Strategies
  for Individuals with ASD
• Findings
• Within the next few years, a significant number
  of young people with ASD will enter adulthood and
  transition into the community.
• There are very few programs designed to meet
  their needs of these individuals in the areas of
  specialized employment and housing. California
  has three to five years to prepare for this
  unprecedented demand.
• There is a lack of effective models that address
  the career technical educational (vocational)
  needs of individuals with ASD who require
  intensive supports and assistance.
• Although new initiatives have begun to expand
  self-directed service delivery models, there are
  major gaps within the private and public
  employment sectors that are related to the broad
  scope of skills, interests, and abilities of the
  ASD population.
• There are few, if any, specialized services
  designed to meet the needs of higher functioning
  adolescents and adults with ASD to enable them to
  develop vocational skills and to assist them in
  finding productive career pathways. Currently,
  there is only one program (Taft Community
  College) that provides these specialized
  services, and it has a five year waiting list
  many more such programs are needed.
• Goal
• Develop and implement models that effectively
  address the educational, housing, transportation,
  social-recreational, and employment needs of
  adolescents and adults with ASD.

16
The California Legislative Blue Ribbon
Commission on Autism

• Policy Recommendations for Designing New
  Employment Housing Strategies
• Expand community college-based programs designed
  for career training of people with ASD across
  levels of functioning.
• Direct the California State University and the
  University of California systems to promote
  multiple educational pathways for persons with
  ASD
• Establish a demonstration project at multiple
  sites that will serve as a career technical
  educational pathway, starting in middle school,
  for students with ASD who require intensive
  supports and assistance
• Endorse the efforts of the State Council on
  Developmental Disabilities in implementing the
  recommendations of Senate Bill 1270 (Chesbro),
  Chapter 397, Statutes of 2006, by promoting
  innovative career training programs for persons
  with ASD in California by 2009
• Enact a state housing financing program designed
  to add financial support and assistance to local
  housing initiatives that bring together families,
  regional centers, and other community
  organizations for the development of specialized
  housing for the ASD population
• Create a model for housing and supporting persons
  with ASD that treats individuals with respect and
  dignity, includes supported living services,
  promotes career and daily living skills, and
  provides a range of opportunities for employment
  and leisure activities.

17
The California Legislative Blue Ribbon Commission
on Autism

• Increasing Awareness among Law Enforcement
  Other First Responders
• Findings
• While police and fire departments have attempted
  to stay abreast of specialized training, there
  are reports of devastating incidents arising from
  a lack of understanding and training involving
  persons with ASD
• The full range of first responders lack
  fundamental skills in understanding and
  responding to this population
• The ASD population growing into adulthood has a
  need to know what to do when victimized
• Courts lack an awareness of persons with ASD in
  terms of their accessing the judicial system in
  all capacities
• Goal
• Assure full integration of persons with ASD into
  community life in California by preparing and
  educating first responders, the judicial system,
  and the persons themselves on this aspect of
  their functioning in community life.
• Policy Recommendations
• Direct the Peace Officer Standards and Training
  Commission to develop an ASD training module
• Direct the Department of Developmental Services
  and the Judicial Council to initiate training for
  persons with ASD, as well as for allied public
  agencies, in accessing and participating in the
  judicial system.

18
The California Legislative Blue Ribbon Commission
on AutismTaft Community College Transition to
Independent Living Programwww.taft.cc.ca.us

• Regional Center Program began in August 1995
• 22 month, residential, comprehensive curriculum
• Mild-moderate developmental disabilities (average
  age 23 yrs)
• Interactive inclusive independence work
  ethics/skills self-respect
• Follow-up information on 133 graduates (November
  2006)

19
The California Legislative Blue Ribbon Commission
on Autism

• Pending Federal Legislation Senate Bill 1642
• Extends authorization of Higher Education Act of
  1965 (Passed Senate 95-0 pending in House)
• Expands model programs for students with
  intellectual disabilities
• Need to establish new models for students who
  require intensive supports
• Promotes partnerships and collaborations
• Promotes housing, vocational education, assistive
  technology
• Promotes leveraging of resources
• Establishes National Coordinating Center
• Technical assistance
• Best practices
• Outcome measures

20
The California Legislative Blue Ribbon Commission
on Autism Future Considerations

• Comprehensive planning across diverse
  constituents communities
• Economic factors fiscal analysis
• Professional and paraprofessional development
• Role of colleges and universities
• Role of Medi-Cal Program federal programs
  such as EPSDT
• Importance of long term quality assurances
  outcome measures
• Consider recommendations legislation that could
  be implemented even with a restrictive budget
  climate