BILL ANALYSIS Ó
SB 158
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Date of Hearing: July 2, 2013
ASSEMBLY COMMITTEE ON HUMAN SERVICES
Mark Stone, Chair
SB 158 (Correa) - As Amended: May 28, 2013
SENATE VOTE : 39-0
SUBJECT : Autism services: demonstration program
SUMMARY : Allows the Regional Center Excellence in Community
Autism Partnerships (RE CAP) demonstration program to be
established.
Specifically, this bill :
1)Authorizes the RE CAP demonstration program to be developed,
and requires the program, if established, to provide improved
services, supports, interventions and other resources to
assist regional center consumers with autism spectrum
disorders (ASD) who reside in underserved communities and
their families.
2)Authorizes the Department of Developmental Services (DDS) to
contract with a University of California or California State
University campus to serve as a coordinating center to develop
the RE CAP program.
3)Provides that the coordinating center may establish
guidelines, best practices, and technical assistance by which
regional centers participating in the RE CAP program will seek
to achieve the following goals in underserved communities:
a) Promote awareness and reduce the stigma associated with
ASD;
b) Improve the early screening for ASD;
c) Improve the diagnosis and assessment of ASD; and
d) Increase access to evidence-based interventions and
treatments for ASD.
1)Makes regional center participation in the RE CAP program
voluntary.
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2)Prohibits the use of state funds, beyond existing regional
center resources, for purposes of funding the RE CAP program,
and allows for additional resources provided by foundations,
federal funding, and other sources allocated by the
coordinating center for each RE CAP program.
3)Establishes a January 1, 2019 sunset date for the RE CAP
demonstration program, as specified.
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EXISTING LAW
1)Establishes an entitlement to services for individuals with
developmental disabilities under the Lanterman Developmental
Disabilities Services Act (Lanterman Act). (WIC 4500 et seq.)
2)Grants all individuals with developmental disabilities, among
all other rights and responsibilities established for any
individual by the United States Constitution and laws and the
California Constitution and laws, the right to treatment and
habilitation services and supports in the least restrictive
environment. (WIC 4502)
3)Establishes a system of 21 nonprofit regional centers
throughout the state to identify needs and coordinate services
for eligible individuals with developmental disabilities and
requires DDS to contract with those regional centers to
provide case management services and arrange for or purchase
services that meet the needs of individuals with developmental
disabilities, as defined. (WIC 4620 et seq.)
4)Establishes an Individual Program Plan (IPP) and defines that
planning process as the vehicle to ensure that services and
supports are customized to meet the needs of consumers who are
served by regional centers. (WIC 4512)
5)Requires that any individual who is believed to have a
developmental disability is eligible for intake and assessment
services, and sets guidelines and timelines for performing
those services. (WIC 4642 et seq.)
6)Requires DDS to develop evaluation and diagnostic procedures
for autism spectrum disorders, as specified. (WIC 4643.3)
FISCAL EFFECT : According to the May 23, 2013 Senate
Appropriations Committee analysis, this bill will likely result
in one-time costs in the tens of thousands of dollars for the
Department of Developmental Services to contract with a campus
to develop best practices (General Fund), as well as potential
costs to the coordinating campus to develop best practices
(non-state funds, amount unknown).
COMMENTS : This bill is part of a package of legislation
resulting from recommendations of the Senate Select Committee on
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Autism and Related Disorders. The Select Committee held an
informational hearing on April 30, 2012 to discuss questions
surrounding equal access to regional center services for
consumers with autism spectrum disorders (ASD). An outcome of
the hearing was the creation of a 20-member Taskforce on Equity
and Diversity for Regional Center Autism Services, which was
charged with developing recommendations to ensure that consumers
of regional center services receive appropriate and timely
supports regardless of race, ethnicity, educational background
and other socio-economic factors. The report, "A Preliminary
Report by the Taskforce on Equity and Diversity for Regional
Center Autism Services," published on March 18, 2013, identified
a number of recommendations for changes to current practice
within the developmental services system based on the work of
five subcommittees. Among them was a recommendation for DDS to
"promote strategies and best practices by which effective
programs and services that promote equity and cultural and
linguistic competency could be shared among all of the regional
centers." In response to this and related recommendations in
the report, this bill seeks to establish coordinating centers on
college campuses, in collaboration with DDS, to serve as
clearinghouses for guidelines and best practices that will be
shared with regional centers throughout the state.
Background : The Lanterman Act guides the provision of services
and supports for Californians with developmental disabilities,
including intellectual disabilities, cerebral palsy, epilepsy,
and autism. Each individual under the Act, typically referred
to as a "consumer," is legally entitled to treatment and
habilitation services and supports in the least restrictive
environment. Lanterman Act services are designed to enable all
consumers to live more independent and productive lives in the
community.
The Department of Developmental Services (DDS) contracts with 21
regional centers throughout the state, which are private
nonprofit entities, to carry out many of the state's
responsibilities under the Lanterman Act. The regional center
caseload is comprised of nearly 260,000 consumers who receive
services such as residential placements, supported living
services, respite care, transportation, day treatment programs,
work support programs, and various social and therapeutic
activities. While most individuals receive treatment and
services in the community, 1,600 consumers reside at one of
California's four Developmental Centers-and one state-operated,
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specialized community facility-which provide 24-hour
habilitation and medical and social treatment services.
Autism : Defined as a group of neurodevelopmental disorders
linked to atypical biology and chemistry in the brain that
generally appears within the first three years of life, autism
is a growing epidemic among children. Autism is often
characterized by delayed, impaired or otherwise atypical verbal
and social communication skills, sensitivity to sensory
stimulation, atypical behaviors and body movements, and
sensitivity to changes in routines. While symptoms and severity
differ among individuals with an autism diagnosis, all
individuals affected by the disorder have impaired communication
skills, difficulties initiating and sustaining social
interactions and restricted, repetitive patterns of behavior
and/or interests. Autism spectrum disorders (ASD), is one of
the commonly-used terms to describe autism and other pervasive
developmental disorders (PDD), and it more appropriately
captures the array of symptoms and varying levels in the
severity of symptoms experienced by individuals with a diagnosis
within ASD.
According to the Centers for Disease Control (CDC) Autism and
Developmental Disabilities Monitoring (ADDM) Network, the
estimated prevalence of ASD for children born in 2008 was 11.3
per 1,000 children, which translates to one in 88 children.
This is a drastic increase from the average prevalence for 2006,
which was 9.0 per 1,000, or one in 110 children. ASD continues
to be 4 to 5 times more prevalent for boys than for girls.<1>
March 2013 DDS data shows that 59,852 regional center consumers
have an autism diagnosis, which is nearly double the number of
individuals with the same diagnosis served by regional centers
in 2007. An additional 4,562 consumers are on the autism
spectrum with a diagnosis of pervasive developmental disorder
(PDD). Among the individuals with ASD served by the regional
centers, 11,484 are female and 52,930 are male, and 40% of the
population with an autism or PDD diagnosis is 0 to 9 years old.
Additionally 32.22% are identified as Hispanic and 34.85% as
White, whereas 7.85% are identified as Black/African-American
and 8.83% are identified as Asian.<2>
---------------------------
<1> http://www.cdc.gov/ncbddd/autism/data.html
<2>
http://www.dds.ca.gov/FactsStats/docs/QR/March2013_Quarterly.pdf
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Early Intervention Services : Research shows that a child's
development can be greatly impacted by early intervention
treatment services, especially when provided during a child's
first three years. During that time, a child is developing
motor skills and language, and begins to socialize with others.
Early intervention services for babies and toddlers that have
been diagnosed with, or seem to be at risk for, a developmental
delay or disability often include physical, cognitive,
communication, social/emotional and self-help skill building.
While there is no proven cure for ASD, early intervention can
dramatically change the trajectory of a child's life over time,
including his or her ability to learn new skills throughout
childhood and an increased ability to integrate into, and have a
positive relationship with, his or her community.
Need for this bill : According to the author, "The significance
of socioeconomic, psychosocial, and cultural factors in the
evaluation and treatment of ASD are considered to be very
important, but unresolved, issues. According to data from the
National Survey of Children's Health, being African-American,
Latino or poor was associated with decreased access to
services."
By establishing a foundation for the coordination of resources
and pooling and dissemination of information to benefit
underserved communities, this bill seeks to increase access to
necessary developmental services for children and families that
may otherwise never interact with a regional center or receive
adequate treatment and services. As the incidence of autism
diagnoses continues to grow, special attention to the language,
resource, and cultural needs of underserved communities will
continue to be necessary. This bill additionally acknowledges
the sequential ties between stigma, low rates of autism
diagnoses and the lack of beneficial early intervention
services. Should the demonstration program included in this
bill be authorized, the guidance it will facilitate could help
to ensure children in underserved regions or demographic groups
receive the early intervention they need to experience better
outcomes throughout their lifetimes.
In support of this bill, the Special Needs Network states, "Two
children are newly diagnosed with autism every hour in
California. Delays in diagnosis and gaps in vital services have
a huge impact on the future of children with autism. Low-income
and minority children are especially vulnerable and regional
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center services are often the only option to manage or improve
their conditions. Gaps, disparities, and poor delivery of these
services can be catastrophic to a young developing mind?SB 158,
commonly known as the Regional Center Excellence in Community
Autism Partnerships (RE CAP) is intended to promote awareness
and reduce the stigma associated with pervasive developmental
disorders, as well as improve early screening and diagnosis."
RELATED LEGISLATION
SB 208 (Lara) requires that a request for proposal prepared by
DDS or a regional center that relates to consumer services and
supports include a section on equity and diversity.
SB 367 (Block) requires Regional Centers to develop a Regional
Center Study and Planning Process for Equity and Cultural and
Linguistic Competency (RESPECT) to oversee issues related to
regional center staff and vendor cultural and linguistic
competency.
SB 555 (Correa) requires that communication about assessment,
individual program plans and other critical documents and
processes be done in a consumer or family member's native
language and other culturally and linguistically competent
manners.
AB 1232 (V. Manuel Pérez) requires the existing DDS quality
assurance instrument to assess the provision of services in a
linguistically and culturally competent manner and include an
outcome-based measure on issues of equity and diversity.
PRIOR LEGISLATION
SCR 51 (Perata) Chapter 124, Statues of 2005, established the
Legislative Blue Ribbon Commission on Autism tasked to identify
gaps in programs and services related to the education and
treatment of children, adolescents, transitional youth, and
adults with autism spectrum disorders, provide recommendations
for the planning of a comprehensive and integrated continuum of
programs, services and provide a report to the Governor and to
the Legislature.
AB 1872 (Coto) 2008, would have established the California
Autism Spectrum Disorder Clearinghouse administered by the
department to provide evidence-based and recommended information
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and practices regarding the education of pupils with autism
spectrum disorders, including, but not limited to, information
about and examples of instructional strategies, fiscal
management practices, and organizational structures supporting
quality service delivery. This bill was vetoed by the Governor.
SB 527 (Steinberg) 2008, would have required the DSS to partner
with at least one regional center to implement a 2-year ASD
Early Screening, Intervention, and Treatment Pilot Program in at
least 3 key geographic areas. The pilot program would have
established best practices for early screening, diagnosis,
referral, and treatment for children with ASD. This bill was
vetoed by the Governor.
SB 1475 (Torlakson) 2008, would have required DSS to establish a
2-year pilot project to, among other things, provide methods,
instruments, and systems of care between regional centers and
school districts for the early identification and assessment of
children with ASD from birth to 5 years of age. This bill was
vetoed by the Governor.
REGISTERED SUPPORT / OPPOSITION :
Support
Association of Regional Center Agencies (ARCA)
Autism Speaks
Health Access California
Special Needs Network (SNN)
The Center for Autism and Related Disorders (CARD)
Opposition
None on file
Analysis Prepared by : Myesha Jackson / HUM. S. / (916)
319-2089