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The California Legislative Blue Ribbon Commission on Autism

Autism Spectrum Disorders: A Public Health Crisis

National Statistics on ASD

ASD now affects 1 in 150 children

ASD now affects 1 in 94 boys

A child is diagnosed once every 20 minutes

There are over 24,000 new cases diagnosed annually

ASD is more prevalent that juvenile diabetes,

childhood cancer & pediatric AIDS combined.

ASD is fastest growing serious developmental disability

There are almost 2 million cases of ASD

The economic impact of autism is over

$90 billion annually

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The California Legislative Blue Ribbon Commission on Autism

Autism Spectrum Disorders: A Public Health Crisis

California 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 >400%
in past 9years
There has been >1000% increase in ASD students K-12
during past 12 years

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The California Legislative Blue Ribbon Commission on Autism

Legislation (Sen. Perata) enacted 2005;

Unanimous & bipartisan support

Autism Commission Goals ~ identify & close gaps:

Early identification & intervention
Education & continuous treatment
The aging out of children

Commissions Three Task Forces

Identify existing problems & gaps
Review potential strategies
Provide specific recommendations

Task Forces Reports (March 1, 2007)

Statewide Townhall Meetings

Final Report to Governor & Legislature

(September 2007)

Legislation extends Commission to Nov. 2008

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Web site: senweb03.senate.ca.gov
The California Legislative Blue Ribbon Commission on Autism

Factors & 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
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 The Autism Commissions Report to the Governor & Legislature:

An Opportunity to Achieve Real Change for Californians

with Autism Spectrum Disorders

Table of Contents

Building Models of Integrated, Comprehensive Services for Early Identification & Intervention

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

The ASD Public Health Crisis: Improving Access to Services & Navigating Complex Systems of Care

Preparing Teachers & Other School-Based Personnel to Educate Children with ASD

Resolving Service Disputes Effectively & Equitably

Designing New Employment & Housing Strategies for Individuals with ASD

Increasing Awareness and Knowledge of ASD among Law Enforcement Officers & Other First
Responders

Conclusions & Next Steps

web site: senweb03.senate.ca.gov 7

 Building Models of Integrated, Comprehensive Services
for Early Identification & Intervention
Findings
Many children with ASD are identified late in childhood or missed altogether

Many children diagnosed with ASD do not receive timely & appropriate intensive interventions.

Existing systems of care often do not collaborate

The medical system is overwhelmed, under-funded, and ill prepared & often lacks linkages to other
systems of care

Families often face a crisis when children with ASD reach age three and transition regional centers
to school districts

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
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 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

Policy Recommendations
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 for the evaluation & treatment of ASD

3. Once these guidelines are adopted, California should adopt policies and procedures to ensure that all
health plans and insurers comply with those guidelines
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 The ASD Public Health Crisis: Improving Access to Services and
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

Policy Recommendations
8. 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
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 Preparing Teachers and Other School-Based Personnel
to Educate Children with ASD
Findings
There is a compelling need to increase the number of well trained special education and regular
education teachers, speech therapists, occupational therapists, counselors, and other specialists

Current practices must be reviewed to ensure that teacher training and preparation are appropriate
and applicable

There are an insufficient number of well-trained paraprofessionals and school aides to assist
teachers

Teachers report that they need more resources and supports

School administrators and principals require additional training and preparation

Teachers need expanded opportunities for pre-service and in-service training

Policy Recommendations
Establish an alternative credentialing program with specialized training on ASD for prospective
special education teachers
a. Increase the number of well trained and qualified teachers
b. Prepare teachers to educate children with ASD

12. Direct the California Department of Education to establish an ASD Multidisciplinary Educational
Training Team Program:
a. Establish the professional competencies, resources, curricula
b. Establish strategies, trainings, and other services for school-based personnel
c. Promote collaboration in the sharing of information between local education agencies and other
educational systems & resources

13. Establish a model program to provide specialized training and career-ladder opportunities for
teacher aides and other paraprofessionals 11
 Resolving Service Disputes Effectively and Equitably

Findings
Consumers and their families may disagree with local education agencies and/or regional
centers and other systems of care about the type and quantity of services

The current system that addresses conflict resolution between consumers and their families
and local education agencies and/or regional centers is variable in its effectiveness across the
state
Some disputes that are appealed to the state for resolution can be very costly, frustrating, and
time consuming, and create delays in the delivery of services. Serious disputes can also divert
resources from services
The resolutions of some disputes are unsatisfactory & perceived to be inequitable to consumers
and their families
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 that may preclude
consumers and their families from pursuing an appropriate and effective dispute resolution
process

Policy Recommendations
Expand the development and broad implementation of effective models for dispute resolution to empower
families at the negotiation table with local education agencies

Direct the state of California to provide a comprehensive and independent review of the
process for resolving disputes at the state and local levels

Direct DDS & CDE to collect information from regional centers and local education agencies 12
about their legal costs related to dispute resolution and litigation involving persons with ASD
 Designing New Employment & Housing Strategies for Individuals with ASD

Findings
Within the next few years a veritable tsunami of young people with ASD will enter adulthood and transition
into the community

There are very few programs designed to meet the needs of these individuals in the areas of specialized
employment and housing

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 sector

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

Policy Recommendations:
9. Direct the California Community Colleges, in collaboration with other appropriate public and non-public
partners, to expand programs designed for career training of people with ASD.

10. Direct the California Department of Education, in collaboration with other appropriate public and non-public
partners, to 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.

11. Endorse the efforts of the State Council on Developmental Disabilities in implementing the recommendations of
Senate Bill 1270 (Chesbro; 2006) by promoting innovative career training programs for persons with ASD

12. 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.

13. Create a model for housing and support for persons with ASD that treats the individual with respect and dignity,
and provides a range of opportunities for employment and leisure activities.

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 Increasing Awareness and Knowledge of ASD among Law
Enforcement Officers & Other First Responders

Findings
There are reports of devastating incidents involving persons with ASD
Law enforcement & other first responders often lack fundamental understanding
and training related to ASD
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
13. Direct the Peace Officer Standards and Training Commission to develop an ASD
training module (i.e., DVD-based technology) and make it widely available to peace
officers and first responders

14. 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 14
 Conclusions and Future Considerations

Comprehensive planning across diverse constituents & communities

Economic factors & fiscal analysis

Consider key "can do now" recommendations & programs that could be

implemented even with a restrictive budget climate such as:
Early Identification, Screening, And Referral
Coordination between various state & local agencies
Surplus State Property And Re-investment Policy
Public Health Advocacy, Education And Research

Professional and paraprofessional development

Role of colleges and universities

Role of Medi-Cal Program & federally funded programs such as EPSDT

Importance of long term quality assurances & outcome measures

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Autism Legislative Package: 2007-2008 Session

SB 527 Early Identification of ASD (Sen. Steinberg)

SB 1475 Pilot on Transitional Services for Early ASD

Treatment (Sen. Torlakson)

SB 1563 Health Insurance Coverage of ASD (Sen.

Perata)

SB 1364 Addressing the Public Health Crisis of ASD

in California (Sen. Cedillo)

AB 2302 Expanding Credentials for Teachers to Educate

Students with ASD (Asm. Bass)

AB 1872 State Clearinghouse for the Education of

Students with ASD (Asm. Coto)

SB 1175 Expansion of Housing for ASD (Sen. Steinberg)

SB 1531 Police Officer Training on ASD (Sen. Correa)

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SB 527 Early Identification of ASD (Sen. Steinberg)

Pilot project (three or more counties) established by DDS to establish

best practices for the effective identification, assessment and
treatment of children with ASD and other developmental delays

DDS will establish an Autism Early Identification Advisory Committee

(AEIAC) to implement innovative approaches, promote
collaboration/communication, utilize new telehealth strategies,
improve professional development, provide appropriate
compensation, and increase public awareness

DDS and AEIAC shall report to the Legislature by July 1, 2011 with an
evaluation and recommendations based on the outcomes of the pilot
project

Will be funded by non-general fund sources

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SB 1475 Pilot on Transitional Services for Early ASD
Treatment (Sen. Torlakson)
Pilot project (three or more counties) by DDS to improve the
transition of children with ASD as they transition at three years of
age from regional centers to school districts

This project shall identify and implement existing models of

excellence and best practices that will establish seamless,
coordinated, and integrated programs between regional centers and
local school districts for the. identification, assessment and
treatment of children with ASD and other developmental delays from
birth to five years of age

DDS shall establish an Early Autism Intervention and Transition

Advisory Council that shall advise and assist the department in the
pursuance of this legislation

DDS and the Advisory Council shall provide a report and

recommendations to the Legislature by June 1, 2012

Will be funded by non-general fund sources

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SB 1563 Health Insurance Coverage of ASD (Sen. Perata)
The Department of Managed Health Care and the Department of
Insurance shall review guidelines and standards on the
screening, diagnosis, assessment, and treatment of autism and
other pervasive developmental disorders

The Department of Managed Health Care and the Department of

Insurance shall develop recommendations by October 1, 2009,
on ensuring that health plans and insurers provide appropriate
and equitable coverage for those illnesses

These recommendations would be consistent with the

protections provided under the existing California Mental Parity
Law, which specifically identifies ASD and PDD.

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SB 1364 Addressing the Public Health Crisis of ASD in
California (Sen. Cedillo)

Legislative intent to declare and establish that that ASD is a

public health crisis within California.

The California Department of Public Health (CDPH) has been

established to improve access to health care services

The Legislature directs the CDPH to establish an Autism

Spectrum Disorders Advisory Council

The Legislature directs CDHP to explore and provide

recommendations on establishing a pilot project for a
voluntary centralized registry of individuals with ASD

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AB 2302 Expanding Credentials for Special Education
Teachers to Educate Students with ASD (Asm. Bass)

Current law requires the Commission on Teacher Credentialing

to report to the legislature and the Governor on the existing
process and requirements for obtaining and special education
credential and to recommend modification to enhance and
expedite those procedures.

Authorizes the holder of a level 1 education specialist

credential who is authorized to provide instruction to
individuals with mild and moderate disabilities to provide
instruction to pupils with ASD

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AB 1872 State Clearinghouse for the Education of
Students with ASD (Asm. Coto)
Based on the recommendations of the Superintendents Autism
Commission, CDE shall establish the California ASD Clearinghouse
in order to provide evidence-based recommendations and practices
for the education of pupils with ASD

Information provided by the Clearinghouse shall be targeted to a

broad range of audiences and shall include the following goals:
Internet web site on evidence-based practices
Creating a toolbox of resources
Featuring demonstration projects

Superintendent of Education shall convene a Clearinghouse

Oversight Committee to represent major stakeholders for the
education of pupils with ASD and to perform the following:
Establish criteria, guidelines, and processes
Select anchor documents and resources
Provide advice and recommendations
Develop online rating systems and periodic surveys
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SB 1175 Expansion of Housing for ASD (Sen. Steinberg)
Expands the existing authority that has been granted to the Bay Area
Housing Consortium Regional Centers to all regional centers throughout
the state

Authorizes all regional centers to enter into negotiations and contracts

with certain specified entities for the payment of lease or leases on
housing for regional center clients pursuant to the fulfillment of the
following stipulations provided for in this act:
That the housing and services are integrated with individuals
without disabilities
Approval of proposed ownership and management by regional
center & DDS
Reasonable costs
Proposal includes approved transfer of property to non-profit
approved by regional center

Bill calls for review of contracts by California Housing Finance Agency and
the Department of Housing and Community Development

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SB 1531 Police Officer Training on ASD (Sen. Correa)
The Commission on Peace Officer Standards and Training shall
create and make available on DVD and electronically a course
on how to recognize and interact with people with ASD

This course will be made available to peace officers,

firefighters, ambulance attendants and other emergency
workers

Possible voluntary identification card

Possible voluntary electronic data base linked to DMV

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