BILL ANALYSIS
SENATE HEALTH AND HUMAN SERVICES
COMMITTEE ANALYSIS
Senator Deborah V. Ortiz, Chair
BILL NO: AB 688
A
AUTHOR: John Campbell
B
AMENDED: May 14, 2001
HEARING DATE: June 27, 2001
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FISCAL: Appropriations
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CONSULTANT:
McCarthy / ak
SUBJECT
Developmental disabilities
SUMMARY
This bill requires the Department of Developmental Services
to develop and implement, by January 1, 2003, uniform based
evaluation protocols and guidelines to determine
eligibility for regional center services, as specified.
ABSTRACT
Existing law:
1.Establishes the Lanterman Developmental Disabilities
Services Act, under which an eligible individual with
developmental disabilities is entitled to services and
supports to meet his or her needs.
2.Provides for the regional centers system, under which the
Department of Developmental Services (DDS) contracts with
21 private non-profit agencies to provide assessment,
eligibility determination, case coordination, and other
services and support in community-based settings.
3.Specifies that the conditions that must exist for an
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individual to be determined eligible for DSS services
must originate before the age of 18 and continue, or be
expected to continue, indefinitely and constitute a
"substantial" disability for the individual.
4.Specifies the disorders that an individual must have to
be eligible for DDS services as: a) mental retardation,
b) cerebral palsey, c) autism, d) epilepsy, and e)
conditions that require treatment similar to that
required for mental retardation.
5.Specifies that handicapping conditions that are solely
physical in nature do not qualify an individual for
services under the Act.
This bill:
1.Requires DDS to develop and implement, by January 1,
2003, uniform functionally based evaluation protocols and
guidelines to determine eligibility for regional center
services.
2.Requires the new DDS protocols to address autism and
disorders not specifically listed as a disorder
potentially qualifying an individual for DDS services,
including familial dysautonomia, that require treatments
similar to those disabilities that are listed as
qualifying disorders.
3.Requires DDS to develop by July 1, 2002, a training
program on the new protocols for regional center staff.
4.Requires DDS to implement the new protocols by January 1,
2003 and make the protocols and guidelines available to
the public during development of the protocols.
FISCAL IMPACT
According to the Assembly Appropriations Committee
analysis, there would be minor, absorbable costs to DDS to
develop and implement eligibility protocols that include
familial dysautonomia. Of an estimated 17 to 20 people
with the disease, 15 are already receiving regional center
services. DDS also indicates the cost of developing and
implementing evaluation protocols and guidelines could be
done within existing DDS resources. No estimate is
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available of any training program costs.
BACKGROUND AND DISCUSSION
1.Familial dysautonomia
This bill is sponsored by the parents of a son with
familial dysautonomia (FD), which is a rare genetic
disorder that seriously impairs the functioning of the
autonomic and sensory nervous systems. FD affects Jewish
families in which both parents carry a particular gene,
and affects fewer than 20 persons in California. Half of
FD patients survive to age 30. Affected individuals can
experience impairment of heartbeat; inability to regulate
body temperature and blood pressure; insensitivity to
pain, heat and cold; inadequate tear production,
resulting in infections, corneal abrasions, and scarring;
and serious gastrointestinal problems. It is present
from birth and poses severe physical, emotional, and
developmental problems as the child ages. According to
information submitted to this Committee by the author,
experts indicate the severity of the disorder varies
greatly from patient to patient, and varies with a
particular individual's age. Learning disabilities are
frequent, but mental retardation is not common in the
disorder.
According to the sponsors, there is inconsistency from
one regional center to another in determination of
eligibility for children with FD. Most have received
regional center services, while some have been denied.
The sponsors argue that these children require treatment
similar to that required by children with mental
retardation or other developmental disabilities listed in
statute. Under current law, only conditions that require
treatment similar to that required for mental retardation
qualify an individual for regional center services under
the "fifth category", as described in 4) on page 1 of
this analysis.
Based on information submitted to this Committee by the
author, in 2000 the state of New York enacted legislation
adding familial dysautonomia to the list of disorders
covered under that state's definition of a developmental
disability. (That state's statutory definition of
eligible developmental disorders differs from
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California's in several ways, for example, by including
neurological impairment as a separate category of
eligibility, and also including dyslexia resulting from a
covered disorder as a category of eligibility.)
2.Evaluation protocols and eligibility guidelines
This bill also is intended to address the issue of
inconsistency among regional centers by requiring DDS to
develop and implement protocols for use by regional
centers in determining eligibility. The protocols would
include not only mental retardation, autism, cerebral
palsy and epilepsy, but also disorders that, while not
specifically named, require treatment similar to these
disorders.
The sponsors' son has been determined to be eligible for
services by the local regional center under the
"requiring similar treatment" to mental retardation
category, but the family fears that as their son grows
and develops, one day talking and eating by himself, the
evaluation may not continue to be supported, even though
he will still suffer pervasive developmental challenges
and require substantial support. The family also fears
that if it ever moves, another regional center may have a
different opinion than their current center.
3.DDS response
According to DDS, hundreds of conditions and syndromes
exist that meet eligibility requirements for regional
center services, even though they are not listed in
statute, while some that are listed may not be severe
enough to result in eligibility for particular
individuals. The key in determining eligibility is the
"substantial disability" standard and an individual's
need for "treatment similar to that required for mental
retardation."
Other attempts have been made over the years to expand
the list of diagnoses in the law, but DDS has opposed an
expansion on the basis that it would be impossible to
list every condition and, regardless, a regional center
would still have to assess each case individually to make
a final eligibility determination. In the case of FD,
because the manifestations of the condition vary from
person to person and over time within one person, as the
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experts describe, an individualized assessment would be
necessary whether or not the condition was listed in law.
DDS also points out that if a regional center's
determination is disputed, existing law provides a fair
hearing process to appeal it.
Subsequent to the introduction of this bill, the sponsor
met with DDS senior staff to discuss the experience of
the families affected by FD and ways to promote
consistency among regional centers in addressing their
needs. As a result of that meeting, DDS has agreed to:
review pertinent genetic and medical information
regarding FD to assess the likelihood that it would be
considered eligible for regional center services;
prepare a summary of FD characteristics as they
relate to regional center eligibility;
use the summary as the basis of a discussion at the
next regional center physicians meeting of the need
for uniform protocol for determining eligibility, and
recommendations for such procedures; and
review the recommendations from the regional center
eligibility task force for a protocol that more
uniformly assesses the "similar treatment" category.
Assessments have a subjective component, and families
often disagree with the regional center when eligibility
is denied or services are limited. AB 1800 (Ortiz),
introduced in the 1999-2000 Legislative session, was
intended to address one aspect of this issue through
requiring regional centers to consider diagnoses by
specialists not employed by the regional centers. That
bill was held in the Assembly Appropriations Committee,
due to the Administration's cost concerns.
In regard to AB 688, regional centers assert they are
attempting to improve their ability to follow eligibility
determination standards closely and maintain internally
consistent practices. The Association of Regional Center
Agencies (ARCA) has on-going committees that work with
DDS to address these issues. In regard to FD, DDS staff
argue that increased funding for regional center-based
clinical teams in the last several years, upgraded
training, and increasing knowledge of rare syndromes that
affect the population will help in this regard.
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1.Opposition arguments
The Inland Regional Center opposes provisions of the bill
requiring functionally based evaluations. The Center
states that such evaluations ignore eligibility
evaluations based on diagnoses and standardized
intelligence eligibility criteria for the DDS regional
center system, increasing cost. (However, according to
ARCA, most other states use a functionally based
assessment, based on degree of the individual
impairment.)
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QUESTIONS AND COMMENTS
1.Background
This bill highlights the contentious issue of which
disorders qualify for services for DDS regional center
services, which provides ongoing, non-means tested
services on an entitlement basis to those whose
disabilities are listed in the statutory definition and
whose disability is substantial. According to DDS, there
are a number of disorders that, in individual cases,
result in a degree and type of disability similar to that
of the disorders listed in existing law; to some extent,
the determination of eligibility in regard to these cases
is a judgement call on the part of the regional center
staff. However, if the individual is not mentally
retarded but is substantially disabled in other ways,
there may be no way to qualify the individual for
services under existing law.
2.Other stakeholders/Legislative review
AB 688 would require DDS to develop and implement
evaluation protocols and guidelines to determine
eligibility, as described. The bill requires DDS to
consult only with the Association of Regional Center
Agencies. As such eligibility determinations involve
significant policy issues, should the bill be amended to
require that other stakeholders knowledgeable about
childhood disabilities be consulted in the development of
the protocols, as well as interested parent groups?
Also, as these eligibility policy issues are of
significant interest to the Legislature, should DDS be
required to submit the proposed protocols to the
legislature for review and adoption, prior to
implementation by DDS? This would allow the legislature
the opportunity to have input into the new protocols for
eligibility determination.
3.Author's amendment
As the budget for FY 2001-2001, soon to be enacted by
the Legislature, is expected to include a requirement for
a study of the definition of autism under the regional
center system, the sponsor has proposed an amendment to
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delete autism as a disorder specifically included as a
disorder to be addressed in AB 688. The sponsor's intent
is to avoid duplication of DDS reviews of eligibility for
specific disorders.
4.Related legislation
Pending legislation, AB 1693 (Assembly Human Services
Committee), requires a mechanism be developed for
temporary rate adjustments for regional centers in high
cost areas of the state as well as rural areas, where
competition to recruit and retain staff is an issue. AB
1693 bill passed this Committee on June 20, 2001.
PRIOR ACTIONS
Assembly Floor: 74 - 0 Pass on Consent
Assembly Appropriations: 21 - 0 Do Pass to Consent
Assembly Human Services: 6 - 0 Do Pass as Amended
POSITIONS
Support: Area XI Developmental Disabilities Board
American Academy of Pediatrics
Children's Hospital of Orange County
Familial Dysautonomia Hope, Inc.
Temple Beth Sholom
4 Individuals
Oppose: Inland Regional Center
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