BILL ANALYSIS Ó
SB 1093
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Date of Hearing: June 17, 2014
ASSEMBLY COMMITTEE ON HUMAN SERVICES
Mark Stone, Chair
SB 1093 (Liu) - As Amended: June 10, 2014
SENATE VOTE : 37-0
SUBJECT : Developmental services: regional centers: culturally
and linguistically competent services.
SUMMARY : Expands the scope of regional center consumer
demographic and purchase of service data that is required to be
compiled and published by the Department of Developmental
Services (DDS) and regional centers, and clarifies that
independent living services can be included in a consumer's
individual program plan (IPP) regardless of whether the consumer
lives independently in his or her own home or with another
person.
Specifically, this bill :
1)Adds consumer residence type, subcategorized by age, race or
ethnicity, and primary language, to the purchase of service
data that DDS and regional centers are required to compile and
report on their respective Internet Web sites annually, as
specified.
2)Adds consumer residence type, subcategorized by age, race or
ethnicity, and primary language, to the annual required
reporting of data on individuals who have been determined
eligible for regional center services but do not receive
services.
3)Adds to the requirement that DDS and regional centers post
such data on their websites annually, a requirement that DDS
and regional centers maintain all previous years' data on
their respective Internet Web sites.
4)Increases the requirement for regional centers to meet with
stakeholders regarding the regional center consumer data from
one annual public meeting to one or more public meetings
annually.
5)Requires the public meetings to be held separately from
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regional center board meetings, requires that the report and
associated public discussion be provided in an understandable
format, as specified, and requires that meetings be scheduled
at times and locations that maximize turnout among the public
and underserved communities.
6)Requires each regional center to report to DDS annually
regarding its compliance with requirements to hold accessible
public meetings, as specified, including information about
whether the consumer characteristic data provided at the
meeting indicates a need to reduce disparities in the purchase
of services among consumers in the regional center's catchment
area.
7)Requires the annual performance objectives within regional
center performance contracts with DDS to include the
development of culturally and linguistically appropriate
services and supports.
8)Requires DDS to notify the client's rights advocacy
contractor, as specified, when a regional center is placed on
probation as a result of not complying with its performance
contract.
9)Requires independent living skills (ILS) services to be
available to all adult consumers who live in the home of a
parent, relative, or other person, or who live independently.
EXISTING LAW
1)Establishes the Lanterman Developmental Disabilities Services
Act (Lanterman Act), under which DDS is authorized to contract
with private non-profit 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 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)Requires public and private agencies serving regional center
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consumers under the Lanterman Act to provide consumers
relevant information in an understandable form to aid them in
making decisions about their own day-to-day lives. (WIC
4502.1)
4)Requires the regional centers to secure appropriate services
and supports, as identified in an IPP. Requires regional
centers to conduct specified activities in order to achieve
the stated objectives in an individual's IPP, including
securing services and supports that meet the needs of the
consumer, giving highest preference to those services and
supports that allow minors to live with their families, adults
to live as independently as possible in the community and
consumers to interact with persons without disabilities in
positive, meaningful ways. (WIC 4648)
5)Requires DDS and regional centers to annually collaborate to
compile, and post on their respective Internet Web sites, data
relating to purchase of service authorization, utilization and
expenditure by each regional center and by specified
demographics including: age, race and ethnicity, primary
language spoken by the consumer, detail on disabilities, and
others. Requires such data to be included for individuals who
have been determined to be eligible for regional center
services but are not receiving purchase of services funds.
(WIC 4519.5 (a) et seq.)
6)Requires regional centers, within three months of the initial
release of data, to conduct public meetings with stakeholders
about the data and to inform DDS and the public of the
meetings 30 days prior to holding them. (WIC 4519.5 (e))
7)Requires DDS to enter into five-year performance contracts
with regional centers, which identify measurable, annual
performance objectives, including assisting consumers to
achieve life quality outcomes, achieving meaningful progress
and developing services and supports necessary to meet
identified needs. (WIC 4629 (a) through (c))
8)Establishes a process for DDS to ensure contract compliance,
including incentives for regional centers that meet or exceed
performance standards, levels of probationary status for
regional centers that do not, and other specified actions.
(WIC 4629 (d)(2))
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9)Prohibits discrimination against individuals in protected
classes, including national origin and ethnic group
identification, for purposes of providing full and equal
access to benefits or programs that are operated or funded by
the state. (GOV 11135 et seq.)
FISCAL EFFECT : According to the Senate Appropriations
Committee, this bill will result in unknown, but likely minor
costs to provide additional independent living skills services
(General Fund and federal funds) and will result in minor
administrative costs to the regional centers to collect and
report additional data and engage in additional stakeholder
outreach (General Fund).
COMMENTS : This bill seeks to enhance existing statute related
to the collection and dissemination of regional center consumer
demographic data to be able to better interpret systemic flaws
that lead to disparities in the purchase and provision of
services for individuals with developmental disabilities. This
bill also clarifies that independent living services are
available to adult consumers regardless of whether a consumer
lives alone in his or her own home or with another person.
Background : The Lanterman Act (WIC § 4500 et seq.) guides the
provision of services and supports for Californians with
developmental disabilities. 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 term "developmental disability" means a disability that
originates before an individual attains 18 years of age, is
expected to continue indefinitely, and constitutes a substantial
disability for that individual. It includes intellectual
disabilities, cerebral palsy, epilepsy, and autism spectrum
disorders (ASD). Other developmental disabilities are those
disabling conditions similar to an intellectual disability that
require treatment (i.e., care and management) similar to that
required by individuals with an intellectual disability.
Direct responsibility for implementation of the Lanterman Act
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service system is shared by the Department of Developmental
Services (DDS) and 21 regional centers, which are private
nonprofit entities, established pursuant to the Lanterman Act,
that contract with DDS to carry out many of the state's
responsibilities under the Act. The principal roles of regional
centers include intake and assessment, individualized program
plan development, case management, and securing services through
generic agencies or purchasing services provided by vendors.
Regional centers also share primary responsibility with local
education agencies for provision of early intervention services
under the California Early Intervention Services Act.
The 21 regional centers throughout the state serve 270,000
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. Approximately 1,300 consumers
reside at one of California's four Developmental Centers-and one
state-operated, specialized community facility-which provide
24-hour habilitation and medical and social treatment services.
December 2013 consumer characteristic data from the Department
of Developmental Services shows that 37% of the individuals
served by the regional centers are identified as White, whereas
35% are identified as Hispanic, 6.4% identify as Asian, 2.4%
identify as Filipino, and nearly 10% identify as Black or
African American.
Services provided to people with developmental disabilities are
determined through an individual planning process. Under this
process, planning teams-which include, among others, the
consumer, his or her legally authorized representative, and one
or more regional center representatives-jointly prepare an
Individual Program Plan (IPP) based on the consumer's needs and
choices. The IPP must give the highest preference to those
services and supports that allow minors to live with their
families and adults to live as independently as possible in the
community.
Independent living services (ILS) : Among the services available
to regional center consumers are independent living skills
services, which provide functional skills training that help
adult consumers acquire or maintain skills that grant them
greater independence and help them live independently in their
own home or with a parent, relative or other individual. This
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service is meant to be available to all adult regional center
consumers, regardless of where a consumer lives, as long as the
service is identified in the consumer's IPP.
Need for the bill : A four-part 2011 Los Angeles Times series
focused on autism included a report titled "Warrior Parents Fare
Best in Securing Autism Services," which addressed disparities
in access to developmental services among families from
different regions and demographic groups. One of the
conclusions drawn based on the reporter's research, as indicated
by the title of the report, was that parents who fight harder
for their children gain more services. This is clearly an
unfair situation given that all children who are determined to
need regional center services based on their assessment and
diagnoses are entitled to such services. Also revealed in the
report was that the "fighter" parents tend to be sophisticated,
wealthier white parents who have the time and resources needed
to navigate the bureaucracy that stands between their children
and necessary services. On the other hand, parents who work
multiple jobs, for example, with linguistic and cultural
barriers that don't usually allow them to navigate the system as
easily, can find it nearly impossible to get their children the
effective services they need in a timely manner.
According to the author, this bill enhances current DDS and
regional center disparity data collection efforts by including
residence type, subcategorized by age, race or ethnicity, and
primary language, to the information that is required to be
compiled and provided to the public. Additionally, the author
maintains that the current process for discussing these data and
receiving input during public meetings does not facilitate equal
participation among different demographic groups, as meetings
are often held in conjunction with regional center board
meetings, and inadequate notice of the meetings results in low
turnout and limited access. By increasing the potential number
of public meetings, requiring meetings to be held separately
from regional center board meetings, and mandating outreach be
done to maximize turnout, this bill seeks to ensure the
processes built around discussing consumer demographic data and
receiving input from the public are inclusive and accessible.
Lastly, this bill provides explicit clarification in statute
that independent living services can be identified in a
consumer's IPP and provided to the consumer regardless of
whether the consumer lives independently in his or her own home
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or with a parent, relative, or other individual. Ensuring this
service is available to all adult consumers who need it could be
especially important to those who, for example, desire to
transition from a shared living arrangement to their own homes
and those who may outlive their parents or relatives and need to
be able to accomplish basic daily tasks for themselves in order
to remain as independent as possible.
Arguments in support : According to the Special Needs Network,
Inc., "This bill compliments existing law requiring DDS and the
regional centers to collect, report, and analyze data on
provision of services to Californians with developmental
disabilities. This bill encourages holistic inclusion of
consumers of every race, culture, and language to optimize
service delivery for all Californians."
With respect to language in the bill pertaining to independent
living skills services, Disability Rights California states, "?
[this bill] amends Welfare and Institutions Code section 4648 to
clarify that Independent Living Skills (ILS) services are
available to regional center consumers whether an individual
chooses to live in the family home or chooses to move out.
Disability Rights California is aware that many individuals with
disabilities from underserved and diverse ethnic and cultural
backgrounds often choose to live at home with their families as
part of their cultural norm. However, some regional centers
require individuals to plan to move out on their own before
providing ILS services. This provision ensures that an
individual receives ILS services, if needed, without being
required to move out of their family home."
Arguments in opposition : In opposition to this bill, the
Association of Regional Center Agencies (ARCA) states, "As
California's regional center system is based on a process of
individualized needs determination, some variances in funding
levels for each person are to be expected. Purchase of service
data collected over the last couple of years has shown this to
be the case. [This bill] would add additional data elements to
the required reporting but would not answer questions about why
certain levels of variance exist or what can be done to better
ensure that the needs of each individual are met. It is also
unclear that holding discussions at community meetings regarding
raw data is an effective strategy to resolving any underlying
issues. It is for these two reasons that ARCA opposes [this
bill]."
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PRIOR LEGISLATION :
AB 1232 (V. Manuel Perez) Chapter 679, Statutes of 2013,
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.
SB 158 (Correa) 2013, would have established 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. It was
vetoed by the Governor.
SB 208 (Lara) Chapter 656, Statutes of 2013, 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 319 (Price) 2013, would have required DDS to ensure that the
regional centers collect, analyze, and report data in a way that
allows for comparisons across regional centers, and require
regional centers to identify plans to reduce disparities. It
died in the Senate Appropriations committee.
SB 321 (Price) 2013, would have required DDS to establish
performance contract guidelines and measures relating to issues
of cultural and linguistic competency. It died in the Senate
Appropriations committee.
SB 367 (Block) Chapter 682, Statutes of 2013, requires regional
centers to include issues related to cultural and linguistic
competency in governing board training requirements, to post
such training on their websites and to annually review the
regional center's provision of services in a culturally and
linguistically competent way.
SB 555 (Correa) Chapter 685, Statutes of 2013, requires a
regional center to communicate and provide written materials in
a consumer or family's native language during the IPP and IFSP
processes and to require that the native language be documented.
REGISTERED SUPPORT / OPPOSITION :
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Support
American Civil Liberties Union of CA (ACLU)
Disability Rights California (co-sponsor)
Public Counsel
Special Needs Network (co-sponsor)
Opposition
Association of Regional Center Agencies (ARCA)
Analysis Prepared by : Myesha Jackson / HUM. S. / (916)
319-2089