BILL ANALYSIS
SENATE HUMAN
SERVICES COMMITTEE
Senator Carol Liu, Chair
BILL NO: SB 383
S
AUTHOR: Liu
B
VERSION: As Proposed to be amended
HEARING DATE: April 14, 2009
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FISCAL: To Appropriations
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CONSULTANT:
Hailey
SUBJECT
Autism spectrum disorders: screening
SUMMARY
Establishes a pilot program to document best practices for
early screening, diagnosis, referral and treatment of
children with autism spectrum disorders.
ABSTRACT
Current law :
1. Requires the State Department of Developmental Services
(DDS) to contract with regional centers to provide various
services and supports to persons with disabilities,
including those with autism spectrum disorders.
2. Establishes in DDS the Early Start program to provide
early intervention services to infants and toddlers who
have disabilities or who are at risk of having
disabilities; these services are to enhance the infants and
toddlers' development and to minimize the potential for
developmental delays.
This bill :
Continued---
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1. Makes various findings and declarations about autism
spectrum disorders.
2. Requires DDS to conduct a two-year pilot program to
establish best practices for early screening, diagnosis,
referral, and treatment for children with autism spectrum
disorders.
3. Requires DDS to include various elements in the pilot
program including
establishing systems of care between primary care
providers and regional centers for the early
identification and assessment of young children with
autism spectrum disorders
testing the use of innovative methods to increase
early screening - including parent-completed screening
tools, screening in community settings, and using
Web-based tools and those compatible with electronic
medical records
determining the methods for telehealth and
telemedicine strategies for professional development
and for clinical consultation, including improving
access to care in rural areas
establishing incentives for continuing education of
medical professionals to assist them with universal
early development screening
testing, if DDS deems it appropriate, methods to
implement a medical home model to improve coordination
among all parties as it relates to screening,
evaluation, and coordination of care and treatment;
and, testing the use of adequate payment and
reimbursement strategies to facilitate screening and
care.
4. Requires DDS to conduct this pilot program through at
least one regional center in at least three geographic
areas.
5. Requires DDS to report, no later than July 1, 2012, to
the Legislature and the governor on the pilot program.
6. Directs DDS to report recommendations for statutory,
regulatory, or fiscal initiatives to improve early
identification and treatment of developmental delays,
including autism spectrum disorders.
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7. Prohibits state general funds from being used to
prepare the report or to fund the pilot program.
8. Directs DDS to seek federal funds for the pilot
program.
FISCAL IMPACT
Unknown
BACKGROUND AND DISCUSSION
Need for the bill
The Centers for Disease Control and Prevention reports that
one of every 150 children has an autism spectrum disorder.
The author writes that early identification and
intervention can change the developmental process for the
child and decrease the impact that autism spectrum
disorders have on children throughout their lives. This
bill is designed to test methods and approaches to ensure
that more children with autism spectrum disorders receive
screening, referral, evaluation, and early intervention
services before they reach their third birthday.
Early detection of autism is increasing
The Department of Developmental Services (DDS) maintains
statistics on the number of children who become regional
center clients by age of diagnosis. Before 2002, the
number of children with autism who became regional center
clients by their third birthday was roughly equal to the
number who became regional center clients between their
third and sixth birthdays. Starting in 2003, that ratio
changed dramatically:
In 2003, 1468 children were diagnosed with autism
before their turning three years of age compared to
1,110 children diagnosed between their third and sixth
birthdays.
In 2004, those numbers were 1705 (by age three) and
1072 (between three and six)
In 2005, those numbers were 2052 (by age three) and
1169 (between three and six)
The department points out that in 2002, it issued Autism
spectrum disorders: best practice guidelines for screening,
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diagnosis and assessment. The department believes that the
wide distribution and use of these guidelines contributed
to the increased likelihood that a child with autism
spectrum disorders will be diagnosed and referred to the
regional centers before his or her third birthday.
What are autism spectrum disorders?
Autism is characterized as a lifelong neurological
disability that affects a person's ability to communicate,
understand language, play and socially interact with
others. Autism spectrum disorders represent the spectrum
of these disabilities and include classic autism, Asperger
Syndrome, Pervasive Developmental Syndrome, and others.
Autism spectrum disorders manifest themselves in various
ways, including difficulty in using and understanding
language; poorly developed social skills; over- and
under-sensitivity to sound, sight, taste, touch or smell;
repetitive behaviors; difficulty with changes in
surroundings or routines; and, uneven skill development.
According to the Centers for Disease Control, the past two
decades have seen an increase in the percentage of children
classified as having autism spectrum disorders. It is
unclear, however, how much of this increase may be
attributed to changes in identifying and classifying autism
spectrum disorders or to environmental changes. The Center
for Disease Controls states that, by current standards,
autism spectrum disorders are the second most common
serious developmental disability after mental
retardation/intellectual impairment, but still less common
than other conditions that affect children's development,
such as speech and language impairments, learning
disabilities, and attention deficit/hyperactivity disorder.
According to data from the California Health Interview
Survey, it is estimated that more than 36,000 children age
3-11 had autism in 2005. DDS indicates that the population
of persons with autism in California's developmental
services system rose by 634 percent from 1987 to 2002, and
nearly doubled in the four years from 1998 to 2002. Again,
it is unclear how much of this may be attributable to
changes in diagnostic criteria, greater awareness,
increased frequency of screening and diagnosis, or
environmental changes causing the disorders.
Regardless of what accounts for the rise, the research
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literature is generally in agreement on methods for
screening and diagnosis, as well as agreeing that there are
improved developmental outcomes for children who receive
early intensive intervention for at least two years during
their pre-school years.
American Academy of Pediatrics recommendations
The policy adopted by the American Academy of Pediatrics
states that "the detection of development disorders is an
integral component of well-child care. Title V of the
Social Security Act and the Individuals with Disabilities
Education Improvement Act of 2004 reaffirm the mandate for
child health professionals to provide early identification
of, and intervention for, children with developmental
disabilities through community-based collaborative
systems."
In order to facilitate early identification of children
with developmental disorders, the Academy recommends that
developmental surveillance should be incorporated at every
well-child preventive care visit, and any concerns raised
by surveillance should be addressed through standardized
developmental screening tests. The Academy further
recommends regular screening tests administered at 9-, 18-,
and 24- or 30-month visits, and specifically recommends
that an autism-specific screening tool should be
administered to all children at the 18-month well-child
visit because "symptoms of autism are often present at this
age, and effective early intervention strategies are
available." (Emphasis added.)
Resources for families with young autistic children
Children with autism are served by a number of government
and private entities: regional centers and DDS; schools,
school districts, and the State Department of Education.
Some are also served by Head Start and the Early Head Start
program (for children younger than three years of age).
Health care service plans and insurers are required under
mental health parity laws to provide benefits on a par with
physical illness, although coverage of specific benefits
and treatments has been unclear. In addition, the
California Center for Autism and Developmental Disabilities
Research and Epidemiology, a government-provider
partnership, conducts surveillance and research on autism
spectrum disorders, as well as creates information on
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autism in multiple languages.
Lanterman Act and Regional Centers
In the late 1960s and '70s, the Lanterman Act established
California's system of care for persons with developmental
disabilities, including autism spectrum disorders, which
consists of 21 regional centers and five state
developmental centers where people are assessed for
developmental disabilities and, if they qualify, are served
for life by a regional center. Children may be served
through this system as soon as diagnosis is complete.
As this committee noted in its analysis of AB 1478 in 2006
(an autism-related measure), over the last decade, the
regional center caseload has grown by 70 percent, compared
to the state's overall population growth of 17 percent for
a comparable period. The Department of Developmental
Service's Fact Book for 2005 indicates that 15.1 percent of
the regional center caseload is described as autistic while
5.3 percent were so described in 1995.
Early Start
The Early Start program is implemented by DDS and regional
centers, in collaboration with the State Department of
Education, local education agencies, and other state
agencies. It serves children under the age of three who
may receive early intervention services if they have a
developmental delay in either cognitive, communication,
social or emotional, adaptive, or physical and motor
development, including vision and hearing, or have certain
risk conditions for these delays.
Under Early Start, eligible individuals may receive
screening and assessment; case management; family training,
counseling, and home visits; health, nutrition, nursing,
physical therapy, psychological, speech and language, and
transportation services, among other services.
Local education agencies
Children age three to 21 may receive specialized
instruction and related services through local education
agencies, through the development of an individualized
education program (IEP).
Recent state actions on autism spectrum disorders
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The 2001 health budget trailer bill (AB 430, Chapter 171,
Statutes of 2001) required DDS to publish evaluation and
diagnostic procedures for the diagnosis of autism spectrum
disorders, and develop a training program for regional
center clinical staff. DDS published Autism Spectrum
Disorders: Best Practice Guidelines for Screening,
Diagnosis and Assessment in 2002. The guidelines include
best practice recommendations for screening, diagnostic
evaluation, ongoing assessment and intervention planning,
and formulation, presentation and documentation of findings
for children age five and younger. The guidelines also
include specific recommendations for children age six and
older.
DDS's other efforts in this area include: data collection,
the autism spectrum disorders learning collaborative,
research, rural telehealth services and publication of fact
books, among others. Additionally, the 2006-07 budget
expanded funding for the Autism Spectrum Disorder
Initiative, launched in 1997, to establish public policy on
diagnosis, treatment and prevention; identify best
practices in assessment, treatment, education and training;
promote partnerships for research and practice; and provide
current and updated information to families and
practitioners. That funding allowed DDS to provide
training to clinicians and other professionals on best
practice guidelines, as well to develop guidelines for
effective interventions, to establish state and regional
autism spectrum disorders resource centers.
In April, 2005, the Legislature announced a Legislative
Blue Ribbon Commission on Autism, charged with the
responsibility of conducting policy overviews and analyses,
as well as formulating and proposing major changes in law
and program development to respond to the needs of persons
with autism and their families. The commission submitted
its findings and recommendations to the Legislature and
governor in 2007.
Previous legislation
This bill is similar in some ways to SB 527 (Steinberg,
2007-08), which the governor vetoed, believing that "the
provisions of this bill can be accomplished
administratively with funding from private, non-state
general fund sources."
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QUESTIONS AND RECOMMENDATIONS
1. The governor vetoed a bill in 2008 - SB 527 (Steinberg)
- that is somewhat similar to this bill. The committee may
want to ask the author if this bill is sufficiently
different from SB 527 or if negotiations with the
administration suggest a different result for this bill.
POSITIONS
Support: American Federation of State, County and
Municipal Employees
California Academy of Family Physicians
(CAFP)
California Medical Association
Oppose: None received
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