BILL ANALYSIS Ó
SENATE HUMAN
SERVICES COMMITTEE
Senator Leland Y. Yee, Chair
BILL NO: SB 158
S
AUTHOR: Correa
B
VERSION: March 21, 2013
HEARING DATE: April 9, 2013
1
FISCAL: Yes
5
8
CONSULTANT: Mareva Brown
SUBJECT
Autism services: demonstration program
SUMMARY
This bill establishes a demonstration program, the Regional
Center Excellence in Community Autism Partnerships (RE
CAP), coordinated by a University of California or
California State University campus which defines
underserved communities in Regional Center catchment areas
and establishes guidelines to improve services, as
specified.
ABSTRACT
Existing Law :
1)Establishes the Lanterman Developmental Disabilities
Services Act, which states that California is responsible
for providing an array of services and supports
sufficient to meet the needs and choices of each person
with developmental disabilities, regardless of age or
degree of disability, and at each stage of life and to
support their integration into the mainstream life of the
community. (WIC 4500, et al)
Continued---
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2)Defines a "developmental disability" as a disability that
originates before an individual attains age 18 years,
continues, or can be expected to continue, indefinitely,
and constitutes a substantial disability for that
individual. This term also includes autism. (WIC 4512)
3)Establishes in California law that the Department of
Developmental Services (DDS) contracts with private
non-profit regional centers (RCs) to provide supports in
order for the state to carry out many of its
responsibilities to provide fixed points of contact in
the community for persons with developmental disabilities
and their families, to the end that these persons may
have access to the services and supports best suited to
them throughout their lifetime. (WIC 4620)
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)
This bill:
1)Establishes a demonstration program that shall provide
improved services, supports, interventions, and other
resources to assist individuals with autism spectrum
disorders (ASD), and their families, who are regional
center consumers and who reside in underserved
communities, as specified.
2)Specifies that the demonstration program shall be known
as the Regional Center Excellence in Community Autism
Partnerships (RE CAP) program.
3)Requires DDS to contract with a University of California
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(UC) or California State University (CSU) campus to serve
as a coordinating center to implement the RE CAP program.
4)Requires that the coordinating campus center, in
collaboration with the participating regional centers,
identify and coordinate the activities and resources of
other participating entities and organizations.
5)Requires DDS to do all of the following:
a) Define the responsibilities of the coordinating
center.
b) Establish appropriate criteria and parameters by
which regional centers may participate in the RE CAP
program.
c) Establish criteria and parameters by which specific
geographic areas in catchment areas of participating
regional centers shall be designated as underserved
communities.
d) Establish guidelines, best practices, and technical
assistance by which regional centers participating in
the RE CAP program shall implement measures in
underserved communities to accomplish any of the
following:
i. Promote awareness and reduce the stigma
associated with ASD.
ii. Improve the early screening for ASD.
iii. Improve the diagnosis and assessment of
ASD.
iv. Increase access to evidence-based
interventions and treatments for ASD.
e) Establish indicators and outcome measures that may
be used to evaluate the efficacy of the RE CAP
program.
6)Provides DDS the option to allow participation of the
regional centers to be on a voluntary basis, or as deemed
necessary by the department.
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7)Requires that funding for the RE CAP program be from
existing regional center resources in combination with
additional resources provided by foundations, federal
funding, and other sources and as allocated by the
coordinating center for each of the RE CAP programs.
8)Requires that no additional state funds shall be
allocated for these purposes.
9)Requires that the coordinating center implement RE CAP
only to the extent that adequate funding and resources
are made available.
10)Requires that no later than January 1, 2018 the
coordinating center provide outcome information about the
efficacy of the RE CAP program to the appropriate
committees of the Legislature, DDS, the Governor's
office, and participating regional centers.
11)Sunsets the program on January 1, 2019.
FISCAL IMPACT
This bill has not yet been analyzed by a fiscal committee.
BACKGROUND AND DISCUSSION
Purpose of the bill
This bill is part of a package that arose from a hearing in
2012 by the Senate Select Committee on Autism & Related
Disorders that focused on disparities in services in
underserved communities.
According to the author, SB 158 will highlight California's
commitment and leadership to individuals with ASD and their
families by establishing landmark programs throughout the
state that will promote best practices for the appropriate
screening, assessment, and treatment of ASD for individuals
and communities that are currently underserved.
Specifically, the bill "establishes an innovative program
that will identify, implement and disseminate
state-of-the-art interventions, supports and best practices
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to those with autism spectrum disorder and their families,
who are members of and underserved demographic ethnic or
racial group and/or residing in an underserved community,"
the author writes.
Senate Hearing
The Senate Select Committee on Autism and Related Disorders
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). The hearing was prompted by a series of articles in
2011 in the Los Angeles Times, which explored the
differences that families of children with autism had in
accessing services. "Warrior Parents Fare Best in Securing
Autism Services" states that people of color, low income,
and socio-economically disadvantaged communities receive
fewer services compared to their white counterparts, and
found that DDS spent an average of $11,723 per child on
whites; $11,063 on Asians; $7,634 on Latinos, and $6,593 on
blacks.
A key point of the series was that parents who fought more
for their children gained more services. Often, these
parents are wealthier, more sophisticated in navigating
bureaucratic systems, fluent in English, and able to devote
significant time to providing for their children. In
contrast, the article states, parents who work multiple
jobs, single parents, immigrants, those who can't speak
English, and those who have multiple children don't have
the time and/or ability to fight for the services that
their children are legally entitled to receive.
Non-English speaking families also are less likely to seek
regional center services and tend to be more comfortable
going to health clinics or providers who are culturally and
linguistically sensitive to their own race/ethnicity.
Often times, families of individuals who are eligible for
regional center services are engaged with community-based
organizations, which provide services and support to
communities with cultural and linguistic barriers as well
as socio-economic barriers.
Though all regional centers are supposed to follow the same
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criteria, average spending per child varies widely from
place to place and race to race, according to data obtained
by The Times under the California Public Records Act. The
articles also noted that in 2010, the system served 16,367
autistic children between the ages of 3 and 6, spending an
average of $9,751 per case statewide. But spending ranged
from an average of $1,991 per child at the regional center
in South Los Angeles to $18,356 at the one in Orange
County.
As a result, Senate President pro Tempore Darrell Steinberg
convened a 20-member Taskforce on Equity and Diversity for
Regional Center Autism Services, which was charged with
finding 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.
A 119-page report, "A Preliminary Report by the Taskforce
on Equity and Diversity for Regional Center Autism
Services," was published on March 18, 2013. Among the
recommendations was the establishment of a uniform data
collection system that would enable a statewide comparison
among the regional centers on issues of equity, diversity
and cultural competency through a regional center
self-assessment evaluation (p. 35). The group also
recommended that the self-assessment information be used to
design future contractual objectives to enhance cultural
and linguistic appropriate services for consumers (p. 36).
Access to Health Care Services
The U.S. Department of Health and Human Services Office of
Minority Health has issued 14 standards for health
organizations to ensure Culturally and Linguistically
Appropriate Services (CLAS). In 2001, the Office of
Minority Health released a report<1> which identified
adoption of CLAS standards as a way to correct inequities
that currently exist in the provision of health services,
-------------------------
<1>
http://minorityhealth.hhs.gov/assets/pdf/checked/executive.p
df
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and to make these services more responsive to the
individual needs of all patients/consumers.
Standards are intended to be inclusive of all cultures and
not limited to any particular population group or sets of
groups. However, they are especially designed to address
the needs of racial, ethnic, and linguistic population
groups that experience unequal access to health services.
<2>
In 2011, the U.S. Department of Health and Human Services'
Interagency Autism Coordinating Committee included research
on disparities among its top objectives. Specifically, the
committee recommended conducting at least three studies
nationally to identify reasons for the health disparities
in accessing early screening and diagnosis services,
including identification of barriers to implementation of
and access to screening, diagnosis, referral, and early
intervention services among diverse populations, as defined
by socioeconomic status, race, ethnicity, and gender of the
child.<3>
Regional Centers
Regional Centers are part of a system of care overseen by
the Department of Developmental Services (DDS). With a
proposed budget of $4.3 billion for community-based
services in 2013-2014, DDS is responsible for coordinating
care and providing services for more than 250,000 people
with developmental disabilities who receive services and
supports to live in their communities, as well as
approximately 1,560 people who resided in developmental
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<2> US Department of Health and Human Services, Office of
Minority Health, "National Standards for Culturally and
Linguistically Appropriate Services in Health Care," March
2001, page ix.
<3>
http://iacc.hhs.gov/strategic-plan/2011/IACC_2011_Strategic_
Plan.pdf
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centers as of March 6, 2013. California's 21 regional
centers are non-profit organizations that provide local
services and supports to individuals through contracts with
DDS. Services for consumers are determined through an
individual program plan.
Autism
Autism spectrum disorders (ASD) are complex neurological
disorders that have an onset in infancy and can cause mild
to severe difficulties in childhood development. Among the
challenges of ASD are language delays, communication
problems, limited social skills and repetitive or other
unusual behaviors. Nationally, ASD affects an estimated one
in 88 children and is present across all racial, ethnic and
socioeconomic backgrounds.
Experts believe there is more than one cause of autism
including genetic factors and growing evidence of
environmental influences. As of December 2012, more than a
quarter of all consumers served by DDS had a diagnosis of
autism, nearly 60,000 Californians. Another 2 percent of
the DDS population, or about 4,500 consumers, had a
diagnosis of pervasive developmental disorder, which is
associated with ASD.<4>
Blue Ribbon Commission Recommendations
SCR 51 (Perata, Chapter 124, Statutes of 2005), established
the California Legislative Blue Ribbon Commission on Autism
to study and investigate the early identification and
intervention of ASD, gaps in programs and services related
to the treatment and education of people with ASD, and the
planning required to address the "aging out" of children
who comprise the current epidemic of ASD. The Blue Ribbon
Commission's findings included the following:
1) A significant number of children with ASD have not
been screened, assessed, or referred to early
intervention services in an appropriate and timely
manner. In underserved communities, the delays are
longer and more frequent;
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<4> Department of Developmental Services Quarterly Consumer
Characteristics Report Index, Jan. 4, 2013
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2) Many ASD programs and services require greater
coordination and integration to effectively serve
individuals with ASD throughout their lifespan;
3) Many ASD programs and services would benefit from the
availability of additional professional and
paraprofessional development and training; and,
4) Highly effective programs and services for ASD should
be identified, analyzed, evaluated, and replicated
throughout the state.
The Blue Ribbon Commission recommended a demonstration
project at multiple sites, including at least one site in
an underserved community, that is based on culturally
sensitive best practices and that will serve as a template
to expand early identification programs.
The Blue Ribbon Commission recommended that the
demonstration project focus on distressed communities;
improve collaboration among providers; provide support to
families and caregivers; establish a seamless system for
service delivery between regional centers and local
education agencies; and promote smooth transitions across
programs for children with ASD from birth to kindergarten.
Related Legislation
This bill is part of a package of legislation drafted from
recommendations in the Taskforce's report. Other bills in
this 2013 package include:
SB 158 (Correa) would establish a pilot project coordinated
by a major university to identify underserved communities
in regional center catchment areas and improve Autism
identification and services in those communities.
SB 208 (Lara) would require 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 319 (Price) Requires DDS to ensure that the regional
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centers collect, analyze, and report data in a way that
allows for comparisons across regional centers, and
requires regional centers to identify plans to reduce
disparities that are identified.
SB 321 (Price) would require DDS to establish performance
contract guidelines and measures relating to issues of
cultural and linguistic competency.
SB 367 (Block) would require 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) would require 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 Perez) would require 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, establishes
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 and practices regarding the education of pupils
with autism spectrum disorders, including, but not limited
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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.
Comments
Should the bill move forward, the author may want to define
how regional center funding will be allocated to the
program, and particularly how funding will be stabilized if
participation is voluntary.
POSITIONS
Support: None received
Oppose:None received
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