BILL ANALYSIS Ó
SENATE COMMITTEE ON HUMAN SERVICES
Senator McGuire, Chair
2015 - 2016 Regular
Bill No: AB 2809
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|Author: |Rodriguez |
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|Version: |May 27, 2016 |Hearing |June 14, 2016 |
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|Urgency: |No |Fiscal: |No |
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|Consultant|Mareva Brown |
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Subject: Developmental services: regional centers
SUMMARY
This bill would require regional centers to provide various
documents in threshold languages of a consumer and the
consumer's family, as specified, including documents related to
the Individual Program Plan or Individual Family Service Plan.
It also requires a regional center to consider any barriers to a
parent participating in intensive behavioral supports and to
document those barriers every six months and adjust
requirements, as specified.
ABSTRACT
Existing law:
1) Establishes the Lanterman Developmental Disabilities
Services Act, which declares California's responsibility
for providing an array of services and supports to meet the
needs of each person with developmental disabilities in the
least restrictive environment, regardless of age or degree
of disability. (WIC 4500, et seq.)
2) Establishes a system of nonprofit regional centers to
provide fixed points of contact in the community for all
persons with developmental disabilities and their families,
to coordinate services and supports best suited to them
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through their lifetime. (WIC 4620)
3) 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)
4) Identifies required components of and timelines for, the
IPP, and identifies the participants who may help to create
the IPP. Additionally, establishes the planning process for
creating the IPP or Individualized Family Service Plan
(IFSP) to include gathering information, conducting
assessments, defining goals, identifying appropriate
services, and other components. (WIC 4646, WIC 4646.5)
5) Requires a regional center to communicate in the
consumer's native language, or, when appropriate, the
native language of his or her family, legal guardian,
conservator, or authorized representative, during the IPP
planning process, including the program plan meeting,
including providing alternative communication services.
(WIC 4646 (h))
6) Requires a regional center to document in a consumer's
IPP the native language of the consumer, or family, as
specified, and to provide a copy of the IPP in the native
language of the consumer or representative, as specified.
(WIC 4646 (h))
7) Requires a regional center to ensure, at the time of
development, scheduled review, or modification of a
consumer's IPP or IFSP, the establishment of an internal
process to adhere to federal and state law and
regulation, as specified. Requires regional centers to
provide the consumer and representatives, as specified, a
statement of services and supports the regional center
purchased for the purpose of ensuring that they are
delivered. The statement shall include the type, unit,
month, and cost of services and supports purchased. (WIC
4646.4, WIC 4648 (h))
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8) Requires regional centers and DDS to annually compile
and post data about purchase of service authorization,
use, and expenditure by each regional center, including
the languages spoken by consumers and the number of
instances when a written copy of the IPP was provided in
a language other than a threshold language. (WIC 4519.5)
9) Defines in regulation a threshold language to mean one
that has been identified as the primary language
indicated on the Medi-Cal Eligibility Data system (MEDS)
(CCR Title 9 1810.410 (a)(3))
10) Requires any vendor who provides applied behavioral
analysis (ABA) services, or intensive behavioral
intervention services, as specified, to conduct a
behavioral assessment of each consumer to whom the vendor
provides these services and to design an intervention
plan that includes the number of hours, and parent
participation needed to achieve the consumer's goals and
objectives, as defined. (WIC 4682.2)
11) Mandates that a regional center may only purchase ABA
or intensive behavioral intervention services when the
parent or parents of minor consumers receiving services
participate in the intervention plan for the consumers,
given the critical nature of parent participation to the
success of the intervention plan. (WIC 4686.2 (b))
This bill:
1) Requires that at the time of development, scheduled
review, or modification of a consumer's IPP or IFSP, the
regional center must make available notices to the
consumer, or his or her parents, legal guardian,
conservator, or authorized representative, or both.
Requires the notices, about specific exemptions to
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prohibited services, be provided in a nontechnical,
understandable form and in threshold languages in a
document describing all of the following and the process
for obtaining each exception or exemption:
a. Transportation services for a minor child
living in the family residence.
b. Exemption to the prohibition on purchasing
services that were suspended in 2009, such as camping,
social recreation and nonmedical activities.
c. Exemption to the prohibition on purchasing
non-educationally based services for consumers aged 18
to 22, including day program, vocational education,
work services, independent living program, as
specified.
d. Exemptions to the limitations to purchase
respite services.
2) Requires that at the beginning of each IPP meeting, the
regional center shall provide a consumer and, when
appropriate, his or her parents, legal guardian,
conservator, or authorized representative information about
the appeal and complaint process in threshold languages, as
defined and appropriate.
3) Requires that the annual statement of services and
supports provided to the consumer be made available in
threshold languages, as defined and as appropriate, to the
consumer or his or her parents, legal guardian,
conservator, or authorized representative, or both.
4) Requires that, in determining the extent of parent
participation required for the provision of ABA or
intensive behavioral intervention services, the IPP or IFSP
planning team shall consider any relevant hardships
suffered by a parent or parents that may constitute a
barrier to the consumer accessing those services,
including, but not limited to, availability of group
instruction courses, conflicts with employment, vocational
training, or educational demands, financial hardship, or
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lack of transportation or child or other family member
care, and language barriers.
5) Requires that any hardships shall be documented in the
IPP or IFSP and reviewed every six months to determine if
there has been a change in circumstances. If the regional
center determines that the extent of parent participation
should be adjusted due to a change in circumstances, the
regional center shall provide adequate notice, as
specified.
FISCAL IMPACT
This bill has been keyed non-fiscal by Legislative Counsel.
However, an analysis by the Assembly Committee on Appropriations
identified one-time costs to Regional Centers to translate the
statement of services for FY 2016-17 (6 mos) of approximately
$1.5 million ($1 million GF). In 2017-18 and ongoing, the cost
would be $3 million ($2 million GF) plus an average growth rate
of individuals with a primary language other than English of
4.63%. Additionally, the committee identified one-time costs to
DDS of approximately $14,000 (GF) to translate information about
the appeal and complaint process, and exceptions and exemptions,
into California's 13 non-English threshold languages.
Translation cost for Spanish is approximately $68 per hour and
other languages are approximately $90 per hour. Each translation
is estimated to take approximately 12 hours.
The Assembly Appropriations Committee analysis additionally
noted ongoing costs of approximately $50,000 (GF) annually to
provide the above information in threshold languages at IPP and
IFSP development, modification, and review meetings.
Approximately 500,000 meetings occur annually. This assumes the
information can be provided in two pages at $0.05 per page. The
analysis also projected unknown costs, but likely in the low
millions (GF), associated with the parental participation
hardship adjustment. Costs would be expected from the likely
decreased effectiveness of behavior intervention with reduced or
no parent participation leading to a potential need to continue
those services for a longer period of time.
BACKGROUND AND DISCUSSION
Purpose of the bill:
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According to the author, health disparities for people with
developmental disabilities can result in significant health,
social, and economic consequences. California's diverse language
and ethnic communities account for about 60 percent of its
population. In recent years, access to developmental services
has been significantly limited due to severe budget cuts, with
minority populations particularly adversely affected, the author
states.
Consumers and family members who have limited proficiency in
English have the right to culturally and linguistically
competent information about accessing developmental services
available through regional centers, including information on the
process for obtaining certain services through statutory
exemptions and meeting other affirmative requirements.
Additionally, the author states, the level of parent
participation required to access intensive behavioral
intervention services is often too burdensome to meet for some
families who are low-income and/or who have limited proficiency
in English and the law should provide for some flexibility in
authorizing for these services by accounting for hardship
factors.
Background
Responsibility for approximately 295,000 consumers in
California's Developmental Services system is shared between the
DDS, which provides oversight and funding, and the state's 21
regional centers, which assess clients' needs and coordinate
services locally. The Lanterman Developmental Disabilities
Services Act established an entitlement to services and supports
for Californians with developmental disabilities who are living
in their communities. A developmental disability is one that
originates before the age of 18, continues, or can be expected
to continue, indefinitely, and constitutes a substantial
disability.
As of this month, 976 consumers lived in three Developmental
Centers, large institutions that once cared for the majority of
the state's consumers, and one smaller state-run facility. The
rest live in various community living arrangements. About 77
percent of all consumers and 97 percent of child consumers live
in the home of a parent or guardian or in their own home.
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Services for consumers are determined through an IPP.
In July of 2009, several regional center categories of services
were suspended or restricted in response to budget shortfalls
related to the economic crisis. These included the suspension of
camping and social recreation activities such as equestrian
therapy, and limits on access to regional center-funded services
while a consumer is between ages 18 and 22, during which time a
consumer's school district is supposed to be finding and
providing services. Additionally, there were limits placed on
the number of hours that consumers could qualify for respite
services.
Access to services
The Senate Select Committee on Autism and Related Disorders held
an informational hearing in 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 the Los Angeles Times, which
explored the differences that families of children with autism
had in accessing services. The series concluded that people of
color, low income, and those living in socio-economically
disadvantaged communities receive comparatively fewer services.
Often, the articles found, parents whose children receive
services are wealthier, more sophisticated in navigating
bureaucratic systems, and fluent in English. In contrast,
parents who work multiple jobs, single parents, immigrants,
those who can't speak English, and those who have multiple
children are less able to access services.
In response, a 20-member Taskforce on Equity and Diversity for
Regional Center Autism Services was appointed by then-Senate
President pro Tempore Darrell Steinberg. The group 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, and
identified 19 recommendations, including the translation of key
documents into a consumer's or their family's native language.
Various pieces of legislation since then have attempted to
implement key portions of the report, and regional centers are
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now posting annually information about caseload, including
consumer languages spoken. This information is posted by
regional center and not aggregated statewide.
Language access
DDS states on its website that it strives to reduce and/or
eliminate any language barriers for persons who are non-English
speaking or who have limited English proficiency. The
department's policy is to provide verbal interpretation and
translation of written materials related to the DDS service
delivery system in the languages that meet a 5 percent threshold
of the persons served, as well as many of other non-threshold
languages as possible by utilizing certified bi-lingual DDS
staff or contracted services.
According to a 2014 report which analyzed California's Medi-Cal
data, about 40 percent of Medi-Cal recipients, or more than 3.5
million people, reported having a language other than English as
their primary language.<1> The report additionally noted that
there were 13 distinct languages that qualified statewide as
threshold languages, and that Spanish was the most frequently
occurring threshold language, with more than one-third of all
Medi-Cal eligible Californians identifying Spanish as their
primary language. Los Angeles had the greatest number of
threshold languages of any single county, with 12. In addition
to Spanish, threshold languages in California include
Vietnamese, Cantonese, Armenian, Russian, Mandarin, Tagalog,
Korean, Arabic, Hmong, Farsi, Cambodian, and other Chinese
languages.
2nd Extraordinary Session of 2015-2016
The issue of access to the regional center system has continued
to be raised in the Legislature. The 2nd Extraordinary session
package, passed this spring, included $11 million to address
disparities. (AB 2X1, Thurmond, Chapter 3, Statutes of 2016)
Funding was targeted at creating pay differentials supporting
bilingual service coordinators at regional centers when fluency
in the second language helps to address the language needs of
the regional center's catchment area. The bill also funds
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<1>http://www.dhcs.ca.gov/dataandstats/statistics/Documents/RASB_
Issue_Brief_Annual_Threshold_Language_Report.pdf
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implementation of recommendations and plans to help reduce
disparities in the purchase-of-service expenditures and to
encourage the development and expansion of culturally and
linguistically appropriate services.
Applied Behavioral Analysis
Applied Behavioral Analysis (ABA) is a scientifically validated
approach to understanding behavior and how it is affected by the
environment. It has been used effectively in addressing Autism
Spectrum Disorder. ABA is often used with younger children,
particularly with those younger than age 4, and provides up to
40-hours per week of intensive teaching of life skills, social
interactions and communication, along with positive
reinforcements for appropriate behaviors. In particular, ABA
techniques can help individuals with Autism or other disorders
master basic skills such as looking, listening and imitating, as
well as complex skills such as reading, conversing and
understanding another person's perspective.
Researchers have reported that many children with autism
experience significant improvements in learning, reasoning,
communication and adaptability when they participate in
high-quality ABA programs.<2>&<3> Some preschoolers who
participate in early intensive ABA for two or more years acquire
sufficient skills to participate in regular classrooms with
little or no additional support. One of the hallmarks of an ABA
program is the need to maintain the active teaching and
reinforcements 24 hours a day, which requires parents to
participate in the ABA to ensure consistency.
Amid the fiscal crisis of 2009, statute was added that allowed
regional centers to only purchase ABA or intensive behavioral
intervention services when the parent or parents of minor
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<2> Roane, Henry, et al. "Applied Behavioral Analysis as
Treatment for Autism Spectrum Disorder," Journal of Pediatrics,
May 2016.
<3> Vismara, Laurie and Sally Rogers, "Behavioral Treatments in
Autism Spectrum Disorder: What Do We Know?" Clinical Psychology,
April 2010.
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consumers receiving services participate in the intervention
plan for the consumers, given the critical nature of parent
participation to the success of the intervention plan. A part of
that requirement has been interpreted to be a mandate that
parents must take a group orientation class on ABA prior to
services being approved, according to the bill's sponsor. The
sponsor said this requirement can be difficult for families,
especially single, working parents, who must take a series of
orientation classes prior to ABA being authorized for their
child.
Related legislation:
SB 1034 (Mitchell, 2016) among other things, would prohibit lack
of parent or caregiver participation from being used to deny or
reduce medically necessary behavioral health treatment, as
specified. This bill is in the Assembly.
ABX2 1 (Thurmond, Chapter 3, Statutes of 2016) implemented
targeted rate increases for the community-based developmental
services system.
SB 82 (Committee on Budget and Fiscal Review, Chapter 23,
Statutes of 2015) required each regional center to offer, and
upon request provide, a written copy of the IPP to the consumer
and family members, when appropriate, in a threshold language.
SB 555 (Correa, Chapter 685, Statutes of 2013) placed various
requirements on regional centers to communicate and provide
certain written materials in a consumer's and/or family's or
other designated individual's native language, as specified.
AB 9 X4 (Evans, Chapter 9, Statutes of 2009) enacted
modifications to the 2009 Budget Act, including, but not limited
to, suspending and limiting certain services for regional center
consumers.
COMMENTS
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This bill is opposed by both the Department of Developmental
Services and the Association of Regional Center Agencies (ARCA).
DDS writes "Current law and ABX2 1 provide flexibility for
regional centers to work with local communities in developing
strategies to address disparities. In contrast to current law
and the newly enacted legislation, AB 2809 would take a
prescriptive approach and would not allow local communities to
determine the best use of limited resources to respond to local
and regional needs." The opposition letter additionally notes
that while some of the information that this bill requires could
be useful to some consumers, is "is not established" that
information is not otherwise being effectively communicated.
ARCA writes in opposition that "Ultimately, the goal of
behavioral services is to help individuals to become more
functional in natural settings. Relaxing parental participation
requirements without developing an alternative plan to help
children transfer their new skills to other settings is
counterproductive."
In order to address these and other concerns, the author offers
and staff recommends the following amendments:
1. Strike Section 1 of the bill.
2. Amend Section 2 as follows to clarify that individuals
who speak non-threshold languages retain the right to
translation services:
WIC 4646.5. (a)(6) At the beginning of each individual program
plan meeting, the regional center shall provide a consumer and,
when appropriate, his or her parents, legal guardian,
conservator, or authorized representative information about the
appeal and complaint process in threshold languages, as defined
in paragraph (3) of subdivision (a) of Section 1810.410 of Title
9 of the California Code of Regulations, as appropriate. The
provision of this section is in addition to and independent of
any other rights, remedies or procedures under any other law.
Nothing in this section shall be construed to alter, limit or
negate any other rights, remedies or procedures provided by law.
3. Amend Section 3 as follows:
WIC 4648 (h) At least annually, regional centers shall
provide the consumer, his or her parents, legal guardian,
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conservator, or authorized representative a statement of
services and supports the regional center purchased for the
purpose of ensuring that they are delivered. The statement
shall include the type, unit, month, and cost of services
and supports purchased. Upon request of the consumer, or
his or her parent or legal guardian, t he regional center
shall make that statement available in threshold languages,
as defined in paragraph (3) of subdivision (a) of Section
1810.410 of Title 9 of the California Code of Regulations,
as appropriate, to the consumer or his or her parents,
legal guardian, conservator, or authorized representative,
or both. The provision of this section is in addition to
and independent of any other rights, remedies or procedures
under any other law. Nothing in this section shall be
construed to alter, limit or negate any other rights,
remedies or procedures provided by law.
4. Amend Section 4 to address concerns that parent
participation requirements be lessened for ABA therapy by
reverting (b)(2) to the original statutory language, as
follows, and amending (d)(4)(A) to clarify which
requirements are being relaxed.
WIC 4686.2. (b) (2) (A) Only purchase ABA or intensive
behavioral intervention services when the parent or parents of
minor consumers receiving services participate in the
intervention plan for the consumers, given the critical nature
of parent participation to the success of the intervention plan.
(B) In determining the extent of parent participation required
for the provision of ABA or intensive behavioral intervention
services, the IPP or IFSP planning team shall consider any
relevant hardships suffered by a parent or parents that may
constitute a barrier to the consumer accessing those services,
including, but not limited to, availability of group instruction
courses, conflicts with employment, vocational training, or
educational demands, financial hardship, or lack of
transportation or child or other family member care, and
language barriers. Any hardships shall be documented in the IPP
or IFSP and reviewed every six months to determine if there has
been a change in circumstances. If the regional center
determines that the extent of parent participation should be
adjusted due to a change in circumstances, the regional center
shall provide adequate notice pursuant to subdivision (a) of
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Section 4710 .
(d)(4) "Parent participation" shall include, but shall not
be limited to, the following meanings:
(A) Completion of group instruction on the basics of
behavior
intervention. Non-completion of group instruction by the
parent or parents, or caregiver(s), shall not be used to
deny, delay or reduce ABA or intensive behavioral
intervention services, if the parent or caregiver can
demonstrate hardship in accessing or attending group
instruction classes. The parents' or caregivers'
demonstration of hardship shall be reviewed by the IPP or
IFSP team every 6 months.
PRIOR VOTES
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|Assembly Floor: |74 - |
| |1 |
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|Assembly Appropriations Committee: |19 - |
| |0 |
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|Assembly Human Services Committee: |6 - |
| |0 |
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POSITIONS
Support:
None
Oppose:
ARCA
Department of Developmental Services
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