BILL ANALYSIS �
SENATE HUMAN
SERVICES COMMITTEE
Senator Leland Y. Yee, Chair
BILL NO: SB 468
S
AUTHOR: Emmerson
B
VERSION: April 15, 2013
HEARING DATE: April 23, 2013
4
FISCAL: Yes
6
8
CONSULTANT: Mareva Brown
SUBJECT
Developmental services: statewide Self-Determination
Program
SUMMARY
This bill requires the Department of Developmental Services
(DDS) to implement a statewide Self-Determination Program
to provide participants and their families with an
individual budget to purchase service and supports
necessary to implement the consumer's Individual Program
Plan. Implementation is contingent upon federal funding.
Requires program participants to agree to manage
self-determination services within the individual budget
amount and with the assistance of an independent financial
manager, vendorized by the regional center, among other
agreements. Requires the State Council on Developmental
Disabilities to issue to the Legislature a report on the
program and requires DDS to report data on the program to
the Legislature, as specified.
ABSTRACT
Continued---
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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, and to support their integration into the
mainstream life of the community. (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 throughout 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) Establishes, contingent upon approval of a federal
waiver, the Self-Directed Services Program (SDS
Program) statewide to provide participants, within an
individual budget, greater control over needed
services and supports. (WIC 4685.7)
5) Defines the duties of a financial services manager,
and other support personnel; provides a definition of
the types of services available through an individual
budget; identifies the purpose and formula for funding
a risk pool to cover unanticipated expenses, and other
elements of the program, as specified. (WIC 4685.7)
6) Establishes that a consumer may choose between one
of two individual budget amounts and requires that
methodologies for determining those two budgets
amounts be detailed in departmental regulations, as
follows:
a. One individual budget amount shall equal
90 percent of the annual purchase of services
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costs for the individual. The annual costs shall
reflect the average annual costs for the previous
two fiscal years for the individual.
b. One individual budget amount shall equal
90 percent of the annual per capita purchase of
service costs for the previous two fiscal years
for consumers with similar characteristics, who
do not receive services through the SDS Program,
based on factors including, but not limited to,
age, type of residence, type of disability and
ability, functional skills, and whether the
individual is in transition. This budget
methodology shall be constructed using data
available from DDS, as specified.
7) Defines the categories of services that an
individual may fund through the individual budget to
include community living, health and clinical
services, employment, training and education,
environmental and medical supports and transportation.
8) Provides that an individual who is determined to be
ineligible, or who voluntarily exits the SDS Program,
shall be permitted to return to the SDS Program upon
meeting all applicable eligibility criteria and after
a minimum of 12 months' time has elapsed.
9) Creates other requirements and guidelines, as
specified, for the program.
This bill:
1) Makes a series of Legislative findings and
declarations about the efficacy of and need for
self-determination services and the intent that the
program will continue after the initial three-year
phase-in of the program.
2) Requires DDS to implement a statewide
Self-Determination Program to provide participants and
their families with an individualized budget that
provides increased flexibility and choice, greater
control over decisions, resources and desired
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services, as specified.
3) Requires that the program be phased in over three
years, initially serving up to 2,500 regional center
consumers and thereafter to be available on a
voluntary basis to all regional center consumers.
4) Requires DDS to ensure the following:
a. Self-Determination is a choice for up to
2,500 regional center consumers.
b. Participants reflect the diversity of
disability, ethnicity and geography of the state.
c. The program is cost-neutral in the
aggregate.
d. A statewide method of administration and
of determining comparable services.
e. Oversight of the self-determined funds
and achievement of consumer outcomes over time.
f. Increased consumer and family control
over which services best meet their needs and the
IPP objectives.
g. Comprehensive person-centered planning,
including an individual budget and services that
are outcome-based.
h. Consumer and family training to ensure
understanding of the planning process and
management of budgets, services and staff.
i. A choice of independent facilitators who
can assist with the person-centered planning
process and financial management services
providers who can assist with payments and
provide employee-related services.
j. Innovation that will more effectively
allow consumers to achieve their goals.
5) Defines the following terms related to
Self-Determination Services:
a. "Financial management services" means a
service to manage and direct the distribution of
funds contained in the individual budget, as
specified. The department shall establish
specific qualifications that shall be required of
a financial management services provider.
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b. "Independent facilitator" means a
person, selected and directed by the participant,
who may assist the participant in making informed
decisions about the individual budget, and in
locating, accessing, and coordinating services
consistent with the participant's IPP, as
specified.
c. "Individual budget" means the funding
available to the participant to purchase services
necessary to implement the IPP. The individual
budget shall be constructed using a fair,
equitable, and transparent methodology.
d. "IPP" means individual program plan.
e. "Participant" means an individual, and
when appropriate, his or her parents, legal
guardian or conservator, or authorized
representative, who has been deemed eligible for,
and has voluntarily agreed to participate in, the
Self-Determination Program.
f. "Self-determination" means a voluntary
delivery system consisting of a defined and
comprehensive mix of services and supports,
selected and directed by a participant through
person-centered planning, in order to meet all or
some of the objectives in his or her IPP.
6) Establishes that the Self-Determination Program
shall only fund services and supports that are
approved by the federal Center for Medicare and
Medicaid Services.
7) Requires that participation in the
Self-Determination Program be fully voluntary and be
available to any eligible regional center consumer. A
consumer may choose to participate in, and may choose
to leave, the program at any time. A regional center
may not require or prohibit participation as a
condition of eligibility services and supports
otherwise available under this division.
8) Defines eligibility for the program as follows:
a. The participant is three years of age or
older.
b. The participant has a developmental
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disability, as defined in Section 4512.
c. The participant does not live in a
licensed long-term health care facility, as
defined.
9) Requires that an individual who is not eligible to
participate in the Self-Determination Program because
they live in a long-term health care may request that
the regional center make arrangements for transition
to the Self-Determination Program, as specified. In
that case, the regional center shall initiate
person-centered planning services within 60 days of
that request.
10) Requires a participant to agree to all of the
following terms and conditions:
a. Receive an orientation to the
Self-Determination Program prior to enrollment.
b. Agree to utilize the services and
supports available within the Self-Determination
Program only when generic services and supports
cannot be accessed.
c. Use only services and supports necessary
to implement his or her IPP and shall agree to
comply with any and all other terms and
conditions for participation in the
Self-Determination Program, as specified.
d. Shall manage Self-Determination Program
services and supports within the individual
budget amount.
e. Must use the services of the
conflict-of-interest-free financial management
services provider of his or her own choosing.
f. May use the services of a
conflict-of-interest-free independent facilitator
of his or her own choosing, as specified. The
financial management services provider shall
determine that the independent facilitator is
adequately trained and otherwise qualified.
11) Requires that a participant who is not Medi-Cal
eligible may participate in the Self-Determination
Program and receive self-determination services and
supports if all other program eligibility requirements
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are met.
12) Requires that individuals who are participating in
the 1998 self-directed pilot project be included in
the new Self-Determination Project, and that a
consumer who elects to participate in the
Self-Determination Project may transfer to another
regional center without losing the right to
participate in the program.
13) Requires that when a participant exits the program,
either voluntarily or because a regional center
determines that a participant is no longer eligible to
continue, the regional center shall provide for the
participant's transition from the Self-Determination
Program to other services and supports, including
developing a new IPP.
14) Requires that if a participant exits the program,
the regional center ensures that there is no gap in
services and supports during the transition period.
15) Requires that a participant who exits the program
for any reason be permitted to return upon meeting
eligibility criteria and approval of the IPP team, as
specified.
16) Requires that a consumer's IPP team detail the
goals and objectives that are to be met through
participant-selected services and design the
individual budget to ensure it helps participants
achieve the outcomes set forth the IPP, as specified.
The completed individual budget shall be attached to
the IPP.
17) Requires that the participant shall implement his
or her IPP, including choosing the services and
supports, as specified.
18) Exempts participants from the Family Cost
Participation Program and other cost control
restrictions, including purchases of services that
were suspended in the 2009 budget, rate reductions,
and others, as specified. Bars a regional center from
prohibiting the purchase of any service or support
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that is otherwise allowable.
19) Requires that a participant have all the appeal
rights established under WIC 4700.
20) Requires DDS, in consultation with stakeholders, to
develop a methodology that ensures individual budgets
are computed in a fair, transparent, and equitable
manner and are based on consumer characteristics and
needs, and a method for adjusting individual budgets
to address a participant's unanticipated needs.
21) Requires the department to ensure that budgets of
all participants are cost neutral in the aggregate.
22) Requires the regional center's IPP team, using the
methodology developed by DDS and the stakeholders, to
determine the individual budget for the participant.
23) Requires that the individual budget amount be
available to the participant each year until a new
individual budget has been determined and provides
that an individual budget be calculated no more than
once in a 12-month period, unless revised to reflect
the unanticipated needs of the participant.
24) Requires that the individual budget be distributed
among uniform budget categories developed by the DDS
in consultation with stakeholders.
25) Permits participants to transfer up to 20 percent
of the funds originally distributed to any budget
category, as defined, to another budget category or
categories, as specified, and permits regional centers
or the IPP team to deny a transfer only if necessary
to protect the health and safety of the participant.
26) Requires an IPP team to annually ascertain from the
participant whether there are any circumstances that
require a change to the annual individual budget.
27) Requires DDS to apply on or before March 1, 2014,
for federal Medicaid funding for the
Self-Determination Program by applying for a state
plan amendment, an amendment to a current home- and
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community-based waiver for individuals with
developmental disabilities, for a new waiver, or by
seeking to maximize federal financial participation
through other means.
28) Provides that the establishment of the
Self-Determination Program shall be contingent upon
federal funding.
29) Requires DDS, in consultation with stakeholders, to
develop informational materials about the
Self-Determination Program, as specified.
30) Requires that each regional center's implementation
of the Self-Determination Program be included in its
contract with DDS and contain these requirements:
a. Contract with local or family-run
consumer organizations to conduct outreach and
training, as specified.
b. Advance funds to a financial management
services provider to facilitate participation in
the program, as determined by a participant's IPP
team.
31) Requires the financial management services provider
to give the participant and regional center, as
specified, with a monthly individual budget statement
describing the funds allocated by budget category, the
amount spent in the previous 30-day period, and the
amount of funding that remains available.
32) Requires that only the financial management
services provider must apply for vendorization, as
specified. All other service providers shall have
applicable state licenses, certifications, or other
state required documentation, but are exempt from the
vendorization requirements.
33) Requires the financial management services provider
to ensure and document that all service providers meet
specified requirements for any service that may be
delivered to the participant.
34) Requires that if a participant chooses to request a
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criminal history background checks for persons seeking
employment as a provider of services and supports and
providing direct care services and supports to the
participant that the check be provided cost-free and
according to current law, as specified.
35) Requires each regional center to establish a local
advisory committee to provide oversight of the
Self-Determination Program, as specified.
36) Requires DDS to annually provide data to the
legislature beginning January 10, 2016, as specified,
including:
a. Number and characteristics of
participants, by regional center.
b. Types and ranking of services and
supports purchased under the Self-Determination
Program, by regional center
c. Range and average of individual budgets,
by regional center, including adjustments to the
budget to address unanticipated need.
d. Participant satisfaction, as specified.
e. The number and outcome of individual
budget appeals and fair hearing appeals by
regional center.
f. The number of participants who voluntary
withdrew from the program, as well as those who
were subsequently determined to no longer be
eligible, and a summary of the reasons why, as
specified.
g. Identification of barriers to
participation and recommendations for program
improvements.
h. A comparison of average annual
expenditures for individuals with similar
characteristics not participating in the
Self-Determination Program.
37) Requires the State Council on Developmental
Disabilities, in collaboration with others, as
specified, to issue a report to the Legislature no
later than three years following the approval of the
federal funding on the status of the
Self-Determination Program, and provide
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recommendations to enhance the effectiveness of the
program.
FISCAL IMPACT
This bill has not been analyzed by a fiscal committee.
BACKGROUND AND DISCUSSION
Purpose of the bill
The author states that this bill is intended to increase
choices of services for families of consumers with
developmental disabilities to allow them to have more
control and flexibility in their service plans. This is
important because due to our recent budget constraints and
lack of funding, many types of effective services have been
cut, according to the author. He states that this bill
creates a Self-Determination Program, which will allow the
consumer and parents to create a service plan that is more
beneficial to the individual receiving the services.
Regional Center system
California's 21 nonprofit regional centers are part of a
system of care for individuals with developmental
disabilities overseen by 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 who receive services
and supports to live in their communities, as well as
approximately 1,560 people who resided in developmental
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. Regional centers
provide diagnosis and assessment of eligibility and help
plan, access, coordinate and monitor the services and
supports that are needed because of an individual's
developmental disability. Services for consumers are
determined through an individual program plan (IPP).
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Self-Determination
The concept of facilitating a way for individuals with
developmental disabilities to choose their own services and
supports, rather than be prescribed a list of customized
services began in the mid 1990s. According to a 2007 Robert
Wood Johnson Foundation report, the growing move toward
de-institutionalization and the home and community based
waivers associated with that move allowed states to serve
more people. However, most states did not have the
resources to meet the long-term care needs of everyone who
sought help.<1>
The foundation created a Self-Determination for Persons
with Developmental Disabilities Program in 1996 to help 18
states implement a more cost-effective system, while
simultaneously giving consumers and their families more
choice in determining the services they receive. The
program - inspired by the success of a 1993
self-determination grant that the foundation gave to the
state of New Hampshire - authorized grant funding of up to
$5 million nationwide. While each program was unique, they
had common tenets including person-centered planning, an
independent support broker, individual budgets and a
designated fiscal intermediary.
An outcomes study commissioned by the foundation found
improvement in some but not all quality of life indicators.
A related study found that a system wide approach and the
availability of direct support workers were critical
factors in the success of self-determination initiatives.
Since then, at least 29 states have implemented
self-determination programs.
Self-determination in California
In 1998 the Legislature passed a Self-Determination Pilot
Project that was conducted in five regional centers and
included about 200 participants. A subsequent report to
the legislature showed that the participants were happy and
-------------------------
<1>
http://www.rwjf.org/content/dam/farm/reports/program_results
_reports/2007/rwjf70028
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had experienced more freedom and responsibility in
controlling the direction of their services and their life
choices. The report also indicated that good
self-determination practices required intensive
person-centered planning, collaboration, and follow-along
support.
Since then, there have been several attempts to bring the
program statewide, including a 2005 effort that was signed
by the Governor but never implemented due to problems
obtaining a federal waiver.
In 2009, amid stakeholder budget workgroup meetings that
were directed to find hundreds of millions of dollars of
cuts within the DDS system, a suggestion was made to use
the self-determination idea to trim costs and provide
greater independence for consumers. This concept, dubbed
the Individual Choice Budget, would have had to achieve
savings in order to be implemented within the budget.
Despite extensive conversations, and a proposal to fund the
individual budget at 90 percent of a consumer's existing
services, talks broke down over how to achieve savings
without making the program mandatory for all consumers, and
over how to fairly craft an individual budget.
In 2011, AB 1244 (Chesbro) attempted to rewrite the
existing statute in order to move DDS beyond the waiver
impasse with the federal government. This bill's language
reflects a combination of SB 1244 and existing statute but
leaves to DDS to determine how to calculate the individual
budget. It also eliminates the language around employment
of support workers and identifies new federal waivers that
could be used to support the program. The sponsor has
stated that CMS has approved other, similar programs in
other states since California originally applied for a
waiver for self-determination services and that this bill
provides additional vehicles that are more likely to
succeed.
Related legislation
AB 1244 (Chesbro, 2011) would have created a
self-determination program to provide individuals with a
single, capitated funding allocation to purchase services
that support goals identified in the IPP. It would have
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replaced the existing statutory language creating a
statewide self-directed services program, which required a
federal waiver for implementation. It died in
the Senate Human Services Committee.
AB 131 (Omnibus health trailer bill, Chapter 80, Statutes
of 2005) created a statewide self-directed services project
contingent upon approval of a waiver for federal funding by
the Centers for Medicaid and Medicare Services. The waiver
application remains pending.
SB 1038 (Thompson, Chapter 1043 Statutes of 1998) created a
3-year pilot project for local self-determination programs
and re-appropriated $750,000 to DDS from specified funds
appropriated pursuant to the Budget Act of 1998 for these
programs.
Comments
Individual budget
Concerns have been raised about the lack of oversight of
the consumer's budget to ensure that funds are distributed
equitably throughout the year. While the author states this
is an implied responsibility of the independent fiscal
manager, staff suggests clarifying that role:
Staff recommends the following amendment:
4685.8. (c) (1) "Financial management services" means a
service or function that assists the participant to manage
and direct the distribution of funds contained in the
individual budget and ensure that the participant has the
financial resources to implement his or her IPP throughout
the year. This may include, but is not limited to, federal,
state, and local tax withholding payments, bill paying
services and activities that facilitate the employment of
support workers by the participant, including, but not
limited to fiscal accounting, and expenditure reports. The
department shall establish specific qualifications which
shall be required of a financial management services
provider.
Cost neutrality
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This bill requires the Self-Determination program achieve
budget neutrality in the aggregate. Concerns have been
raised about how to ensure neutrality across regional
centers. Staff suggests cost neutrality be achieved within
each regional center.
Staff recommends the following amendment:
4658.8 (l) The department, in consultation with
stakeholders, shall develop a methodology for individual
budgets that ensures the budgets are computed in a fair,
transparent, and equitable manner and are based on consumer
characteristics and needs, and a method for adjusting
individual budgets to address a participant's unanticipated
needs. In developing this methodology, the department shall
ensure that budgets of all participants are cost neutral in
the aggregate within each regional center .
Number of participants
This bill establishes that initially, "up to 2,500 regional
center consumers may participate in the Self-Determination
Program statewide, and that regional centers must continue
to add any clients who want to participate in the program
after three years."
Should this bill move forward, Staff recommends that the
author work with stakeholders to clarify how to allocate
the slots across the regional center system so the cap is
met but not exceeded during the first three years.
Budget methodology
This bill leaves to DDS the methodology for determining the
individual budget. Historically, this issue has been
controversial. The existing statute required the consumer
be provided two budget calculations - one based on the
consumer's previous two-year purchase of service average
and the other based on the average cost of services for
consumers with similar needs for the prior two fiscal
years. The consumer could then choose which budget to
accept. AB 1244 (Chesbro, 2011) established the same budget
methodology. While the author has deliberately left this
issue to the Department to decide in SB 468, staff suggests
providing some direction to DDS in deciding the
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methodology.
Should this bill move forward, Staff recommends that the
author work with stakeholders to better define a
methodology or methodologies that DDS should consider in
establishing the individual budget.
POSITIONS
Support: Disability Rights California (sponsor)
Autism Society Los Angeles
Easter Seals California
State Council on Developmental Disabilities
Oppose: None received
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