California’s Ailing System of Caring for Children with
Special Health
Care Needs
Prepared by
Peter Hansel and Cori Reifman
California Senate Office of Research
Elisabeth Kersten
Director
May 2000
Executive Summary
Background
Findings
* Growing Problems
with Provider Participation
* Inadequate Case Management Staffing
* Need for Better State Oversight and
Enforcement
of Program Standard
* Inadequate Attention to
Family-Centered Care as
a Program Goal
* Inconsistent County Application of
Program Standard
* Fragmented Service Delivery as Result
of Expansion
of Managed Care
* Outdated Income Eligibility Standard
* Need to Develop More Flexible Medical
Eligibility
Standard
* Conclusions
Acknowledgments
Appendices
A. Medical Conditions Covered by the CCS Program
B. February 4, 2000, CCS Roundtable Meeting Agenda and List of
Attendees
C. List of Persons Interviewed for Study
Executive Summary
In June 1998, the Senate Office of Research (SOR)
was asked by the then-chair
of the Senate Health and Human Services Committee to study the
California
Children’s Services (CCS) program to determine the extent to
which the
program is providing timely access to services for children eligible
for
the program.
The CCS program provides specialized health care
services to children
with qualifying health care conditions. CCS is one of the oldest health
programs in the state, having been established in 1927 in the aftermath
of the polio outbreaks of the early part of the 20th century.
SOR interviewed numerous organizations and
individuals involved with
the CCS program, including medical providers, state and county program
administrators, and family representatives. In total, SOR interviewed
or
received comments from over 50 stakeholder representatives and policy
experts.
A summary of SOR’s principal findings and options was
released January
3, 2000. On February 4, 2000, SOR convened a policy roundtable forum on
the future of the CCS program, at which numerous stakeholder
representatives
presented additional information and perspectives on the needs of the
program.
This paper summarizes SOR’s main
findings from the interviews and the
roundtable forum and presents options for addressing growing barriers
to
services to families under the program.
Principal Findings of Study
Despite the success of the CCS program in helping
children with special
health care needs gain access to medical treatment and therapy
necessary
to restore and improve their functioning and long-term prognosis, SOR
concludes
that a number of problems limit the ability of the program to provide
timely
and seamless services to eligible children. In some cases, this
produces
very lengthy delays in children receiving services. These problems
include:
* Growing problems
with the adequacy of provider
participation. The report finds that low reimbursement rates for CCS
and
Medi-Cal services are causing many physicians and other providers to
cease
seeing CCS/Medi-Cal patients or limit the number they will treat. As a
result, waiting times of 3 – 6 months, and in some cases
more, for services
are not uncommon, depending on the subspecialty. Lengthy delays in
claims
reimbursement and claims editing procedures only serve to further
reduce
the effective rate of payment to providers. The report outlines options
to increase rates, speed up payment, and better track provider
participation
in the CCS and Medi-Cal programs.
* Inadequate case
management staffing. According
to material reviewed by SOR, existing staffing standards permit
staff-to-client
ratios in excess of 500-to-1 in larger counties and in excess of
1,000-to-1
in the state centers serving smaller counties, far too high to permit
timely
eligibility determinations, treatment authorizations, and claims
payment
in many counties. Providers and families report having to wait months
for
treatment approval in some cases, while the child’s condition
goes untreated.
The report recommends that CCS staffing standards be updated and made
more
consistent with those used in other programs serving children and
adolescents.
* Need for better
state oversight and enforcement
of program standards. Lack of resources for state oversight of the CCS
program and delays in implementation of a state-county linked
management-information
system are resulting in a lack of compliance in many counties with
basic
program standards, including timeliness standards. The report outlines
a number of options for addressing this, including increasing the
frequency
of county and provider site reviews and expediting implementation of
the
CMS Net management-information system.
* Inadequate
attention to family-centered careas
a program goal. The report finds that lack of focus on family-centered
approaches to care results in the CCS program being frequently
confusing
for families and difficult to participate in. The report identifies a
number
of options for addressing these problems, including increased training
for CCS staff and providers, greater efforts to make CCS documents and
materials more understandable, establishment of a family ombudsperson
and
800 telephone number, and clarification of standards regarding access
to
medical transportation services.
* Inconsistent
county application of program standards.
The report finds that county funding pressures may lead to an
inconsistent
application of program standards. This has resulted in children with
similar
conditions receiving publicly financed health services in some counties
and not in others or receiving different types of care. Differences in
application of standards also result in different financial obligations
for similarly situated families. The report outlines options that
include
providing greater CCS staff training on program standards,conducting
more
frequent county site reviews, making it easier for families to access
CCS
services while their Medi-Cal applications are pending, and returning
the
county share of cost for CCS to the 25 percent level that existed prior
to the 1991 program realignment.
* Fragmented
service delivery as a result of managed
care carve-out. Because CCS services are provided separately from other
services children receive when they are enrolled in Medi-Cal managed
care
plans (referred to as being "carved out" of the plan contracts), delays
and disruptions in continuity of care frequently result. The report
details
options in this area, including implementing a "medical home" concept
for
CCS-eligible children, in which responsibility for primary care and
care
coordination would be assigned to a primary care provider or
specialist,
depending on the nature of the condition. In addition, DHS could be
required
to contract for a study of medical outcomes, family satisfaction, and
health
status of CCS-eligible children enrolled in managed care plans.
* Outdated income
eligibility standards. In 1982
the financial ceiling for eligibility for the CCS program was reduced
from
$100,000 in annual gross household income to $40,000. Over time, the
effect
of this change has been to reduce the number of children eligible for
the
program, as well as those who remain eligible for the program once on
it.
At least 22,000, and perhaps as many as 130,000 additional children
would
be eligible for the program if the income standard were returned to
$100,000.
The report puts forward options to increase or index the financial
eligibility
limit to a standard that more realistically reflects the financial
burdens
CCS conditions can impose on families.
* Need to develop
more flexible medical eligibility
standards. A number of stakeholder representatives expressed a desire
to
see medical eligibility for the CCS program eventually be based on
general
criteria, including a child’s functional status, level of
condition, or
need for services, rather than on defined medical conditions, which
they
believe acts to exclude some children who could benefit from the
services
provided by the program. The report suggests requiring DHS to study the
feasibility of developing alternative medical eligibility criteria.
Background
According to some studies, 15 to 20 percent of all
children have special
health care needs, including serious and chronic health conditions,
developmental
disabilities, and mental illness, that require specialized health care
services.
States, as a condition of receiving federal Title
V Maternal and Child
Health (MCH) block grant funds, are required to spend 30 percent of
their
MCH grant funds on programs for children with special health care
needs.
In California, children with defined serious or chronic physical health
conditions who meet income and residency requirements are eligible for
the California Children’s Services (CCS) program, which is
one of the programs
by which California meets the federal requirement.
CCS provides medical diagnosis, treatment, case
management, and therapies
to children under age 21 with defined handicapping conditions that can
be cured, ameliorated, improved, or stabilized through intervention.
To be eligible for CCS, children must be under 21
years of age, be California
residents, have qualifying medical conditions, and meet income limits
established
for the program. Eligible medical conditions include birth defects,
heart
conditions, cleft palate, spina bifida, chronic illnesses, cancers,
blood
disorders, genetic diseases, perinatal conditions, and effects of
serious
injuries such as fractures, spinal cord injuries, and burns (See
Appendix
A for a more complete listing of eligible conditions).
Families must have gross incomes below $40,000, as
determined by their
last tax return. Children eligible for no share-of-cost Medi-Cal or for
the Healthy Families program automatically meet the financial
eligibility
requirements. In addition, families with incomes above $40,000 can
qualify
for the program if expenses for a child’s care exceed 20
percent of their
adjusted gross incomes.
Services provided under the program are limited to
those required to
treat the condition and include medical diagnosis, medical and surgical
treatment, hospitalization, physical and occupational therapy, durable
medical equipment, prescriptions, and medical case management.
For uninsured and Medi-Cal-eligible children, CCS
authorizes and arranges
all care related to the condition. For privately insured children, CCS
acts as a form of back-up coverage for the condition, covering services
not provided by the plan, as well as deductibles and copayments, if
any.
Services are provided to CCS-eligible children by
a network of approved
providers. Care for children with the most complex conditions
– for example,
congenital heart disease, inherited metabolic disorders, chronic lung
disease,
cancers, hemophilia, and craniofacial disorders – is provided
or arranged
by designated special care centers located throughout the state, most
of
which are located at academic or children’s hospitals.
The program is overseen by the
Children’s Medical Services Branch within
the state Department of Health Services, which sets guidelines and
regulations
for the program and approves health care providers for participation in
the program. Twenty-six counties with populations in excess of 200,000
(referred to as independent counties) administer most aspects of the
program
including eligibility determinations, authorization of services, and
case
management. Smaller counties (known as dependent counties) rely on
three
state-administered regional offices for medical eligibility
determinations,
authorization of services, and case management, but handle financial
and
residence eligibility determinations.
Caseload and Expenditure Trends
In the 1999–00 fiscal year, the
estimated caseload for the program is
147,650 children. About 75 percent of these are Medi-Cal beneficiaries
and the remainder are what’s referred to as CCS-only cases.
Figure 1 shows
caseload trends for the CCS program from 1994-96 through 1997-98, the
most
recent year for which audited data is available. According to DHS, in
1995-96,
283,190 children were estimated to have conditions that would qualify
for
CCS coverage, of which 123,492 were eligible for the program in that
year.
According to DHS, the additional 159,698 children were generally
ineligible
because their family incomes were above the program’s
financial threshold.
Figure 1
CCS Caseload Trends
Year
Total Caseload
Medi-Cal Eligible
CCS-Only
1994-95 129,994 89,966 40,028
1995-96 123,473 89,066 34,408
1996-97 128,498 95,319 33,179
1997-98 133,302 99,642 33,660
Percent Change
94-95 – 97-98
2.5%
10.8%
-15.9%
In 1997-98, the last year for which full data is
available, expenditures
on CCS-covered services, including treatment and administration,
totaled
$703 million, of which Medi-Cal paid about $600 million, with the
remainder
paid 50/50 by the state and counties. In the current fiscal year, total
expenditures (treatment and administration) for the non-Medi-Cal
portion
of the program are estimated to be $114.3 million, with $52.3 million
coming
from the General Fund, $54.8 million from county funds, $4.7 million
from
federal Title V MCH block grant funds, $1.4 million from Federal Title
XXI State Children’s Health Insurance Program funds, and $1.1
million from
enrollment fees and funding adjustments.
Findings
CCS is a highly specialized program which has
successfully assisted
thousands of children with special health care needs in gaining access
to medical treatment and therapy necessary to restore and improve their
functioning and long-term prognosis. Further, CCS serves children with
complex and difficult-to-treat conditions and symptoms who, in the
absence
of the program, would face limited access to state-of-the-art
treatments
to address their conditions. Despite this, SOR’s review
concludes that
a number of problems limit the ability of the program to provide timely
and seamless services to eligible children and, in some cases, produce
very lengthy delays in children being able to access services. These
problems
include:
* Growing problems
with the adequacy of provider
networks.
* Inadequate case management staffing.
* Need for better state oversight of and
enforcement
of program standards.
* Inadequate attention to
family-centered care as
a program goal.
* Inconsistent county application of
program standards.
* Fragmented service delivery as a
result of the
exclusion of CCS services in managed care plan contracts.
* Outdated income eligibility standards.
* Need to develop more flexible medical
eligibility
standards.
(Note: Although the focus of this study was the
CCS program, those who
commented on earlier drafts pointed out that many problems hindering
access
to CCS services also apply to the Genetically Handicapped Persons
Program
(GHPP). GHPP is a highly specialized program serving adults with some,
but not all, CCS-eligible conditions and operates in some respects
differently
from CCS. SOR has attempted to note throughout the text areas where
problems
or options apply to both programs. However, a focused review of GHPP,
while
warranted, was beyond the scope of this project.)
Growing Problems with Adequacy of Provider
Networks
CCS depends on an established network of
physicians, therapists, and
hospitals to provide care to the over 140,000 children enrolled in the
program at any given time. Care for children with special health care
needs,
particularly those with the most complex cases, is fairly concentrated
among providers in the state. For example, according to data supplied
by
the California Children’s Hospital Association (CCHA), eight
hospitals
(generally children’s hospitals and teaching hospitals)
provided over 40
percent of all Medi-Cal-financed CCS hospital days in 1998. Similarly,
approximately 140 special care centers statewide provide or arrange
virtually
all outpatient care for certain designated conditions, ranging from 14
such centers for spina bifida to 22 for treatment of craniofacial
disorders.
Health care providers who participate in the CCS
program are reimbursed
at Medi-Cal rates for services. According to many sources, Medi-Cal
pays
far below rates paid by commercial plans or Medicare for comparable
services.
According to the American Academy of Pediatrics, services provided
under
Medicaid are reimbursed at rates20 to 50 percent less than the same
services
provided under Medicare. According to a 1998 study of rates
commissioned
by the Medi-Cal Policy Institute, Medi-Cal fee-for-service payments for
office visits are typically 40 percent of those of other payers,
including
Medicare and large commercial health plans. Reimbursement shortfalls
for
institutional providers serving CCS-eligible children for inpatient and
outpatient care have been exacerbated by:
* Limits on
reimbursement from managed care plans,
* Lack of a
permanent funding source for reimbursement
for graduate medical education costs for teaching hospitals serving
Medi-Cal
and CCS patients,
* A shift in case
mix to more severe cases being
referred for hospitalization, and
* Declines in
reimbursement under other public programs
these institutions rely on, such as the Medi-Cal disproportionate share
hospital program (DSH).
This has decreased the ability of hospitals to
support special care
centers by providing staffing and facility support.
While physicians and medical groups had some
ability to offset losses
from seeing Medi-Cal and CCS patients through reimbursement from
commercial
payers in the 1980s and early 1990s, the rapid expansion of managed
care
and tightening of reimbursement under commercial plans has made that
more
difficult. Among specialties, pediatrics has been especially hard-hit
by
stagnating Medi-Cal payment rates because a higher percentage of
children
live under poverty and qualify for Medi-Cal than the population
generally.
Further, adult-patient practices have had access to relatively more
generous
Medicare reimbursement levels for treatment of elderly and disabled
patients.
According to several sources, low reimbursement
rates for CCS and Medi-Cal
services are causing many physicians and other providers to cease
seeing
CCS/Medi-Cal patients, leave the state, or otherwise limit the number
of
CCS/Medi-Cal patients they will treat. In addition, medical groups,
hospitals,
and special care centers specializing in treatment of children with
complex
conditions report increasing difficulties hiring and retaining
qualified
subspecialists. SOR was informed of cases where it has taken centers
years
to fill vacant positions as well as cases where it has been impossible
to fill positions.
The net result is growing waiting times for some
subspecialty services.
For example, according to data provided by CCHA, average waits for
treatment
of CCS-eligible conditions at special care centers and subspecialty
clinics
at three hospitals now last between a few days and several months. This
includes up to two months in the case of craniofacial conditions, four
months for diabetes/endocrine conditions, two months for nephrology,
four
months for neurology, three months for psychiatry, two months for
pulmonary
conditions, eight months for rehabilitative services, and two months
for
spina bifida.
According to physicians’ groups,
children with certain conditions have
to wait three to six months for appointments. In Los Angeles, it is
virtually
impossible for children to find pediatric orthopedic services outside
of
academic, county, and other safety-net medical centers. Stakeholders
told
SOR that problems with reimbursement and shortages of pediatric
subspecialists
are resulting in children with conditions amenable to treatment in an
outpatient
setting – for example, children with cancer who are receiving
chemotherapy
– in some cases being hospitalized because reimbursements are
higher and
they can receivecare more expeditiously. Stakeholders stated that gaps
and delays in access to services have in some cases resulted in
patients’
deaths and worsening of their conditions, in addition to the
inconveniences
and discomforts caused by delays in treatment.
Medi-Cal local initiative managed care plans also
told SOR that in many
counties plans have to contract with pediatric subspecialists at up to
200 percent of the Medi-Cal/CCS rates in order to maintain access to
these
services.
Stakeholders told SOR that many counties,
particularly rural counties,
have difficulties recruiting and retaining pediatric specialists at
Medi-Cal
payment rates and must refer children outside their counties for
services.
This finding is reinforced by the CCS needs-assessment survey DHS
prepared
in 1998, which focused on rural and semi-rural counties. It found that
nearly 40 percent of families travel over 80 miles round trip to see a
doctor/clinic authorized by CCS. However, it is not clear to what
extent
the travel distances reflect shortages of providers and to what extent
they reflect referral patterns, particularly for tertiary and
higher-level
care.
In addition to being low generally, claims for
reimbursement for CCS
services are routinely reduced by the Medi-Cal fiscal intermediary,
Electronic
Data Systems (EDS), based on the frequency of the service for which
reimbursement
is being claimed and whether the visit is an initial or follow-up
visit.
The result is that rates for CCS services do not reflect that visits
involving
CCS-eligible children are more complex, more frequent, and more
time-consuming
than visits involving children in general. While rates have been
augmented
in recent budgets (including a 20 percent increase for preventive and
primary
care services in 1998 and a 5 percent adjustment for CCS physician
services
in the 1999-00 state budget), they are still considerably below
standard
rates for comparable services. Finally, few counties have the capacity
to handle treatment authorization requests or claims electronically.
In many counties, providers report lengthy waits
for claims reimbursement,
both for claims submitted to EDS and to the county itself. (Several
GHPP
providers indicated similar problems with GHPP claims reimbursement.)
Providers
frequently cited lack of a process for electronic submission of claims.
According to providers interviewed, the emphasis on paper submission of
claims increases the potential for errors in reviewing the claims and
delays
in payment.
While most of the concern regarding reimbursement
is focused on physicians
and hospitals, stakeholders made it clear that low reimbursement levels
are affecting children’s access to virtually all services
covered by CCS,
including hearing aids, laboratory services, X-rays, dentists,
orthodontists,
audiologists, and pharmacy services.
Options to deal with these problems include:
* Establishing
Medicare payment levels as a benchmark
for CCS payments for services to children. This would recognize that
treatment
of CCS-eligible conditions is as complex and time-consuming as
treatment
of conditions common to elderly and adult disabled patients;
* Increasing
Medi-Cal rates for CCS services to the
Medicare level but not indexing them for changes in Medicare payment
levels.
This would permit initially an equivalent increase in rates but would
not
guarantee that the rates would maintain parity with Medicare rates over
time;
* Requiring DHS to
conduct periodic assessments of
the adequacy of CCS payment rates vis-à-vis commercial
rates, as
well as the impact of CCS payment practices on provider participation
and
accessibility of services to CCS clients;
* Providing
reimbursement to CCS (and GHPP) special
care centers for case management, case coordination, and other
nonphysician
services;
* Making permanent
the supplemental Medi-Cal reimbursement
program for graduate medical education expenses administered by the
California
Medical Assistance Commission (CMAC), or establishing a separate
supplemental
payment program for children’s hospitals;
* Requiring CMAC to
develop a risk-adjusted system
for Medi-Cal payments to hospitals for treatment of CCS-eligible
conditions
so that payment rates are linked to the complexity of the cases
treated;
* Adjusting
Medi-Cal disproportionate share hospital
payment rates for children’s hospitals to establish parity
between children’s
and other disproportionate share hospitals in the amount of the daily
cost
cap covered by disproportionate share payments;
* Removing EDS
claims-processing edits that result
in denial of claims based on the frequency of services or that reduce
reimbursements;
* Establishing a
process for electronic submission
of claims to counties and to the state;
* Requiring EDS to
document claims turnaround times
and establishing a time limit for processing clean claims.
Inadequate Case Management Staffing
Delays in accessing services are compounded by
county staffing standards
that most stakeholders view as unrealistic. DHS establishes staffing
standards
for the program that are used to determine allowable state
reimbursements
for county administrative costs, including case management and program
administration. Counties are free to exceed these standards on a
case-by-case
basis but bear part of the cost of doing so. Most observers agree the
standards
are out of date and result in case management ratios exceeding 500
clients
per case manager in most independent counties and up to 1,000 clients
per
case manager in the state centers that serve dependent counties. This
is
far in excess of standards for comparable programs, such as regional
centers,
which serve developmentally disabled clients and the CalLearn program,
which serves pregnant or parenting teenagers. In particular,
stakeholders
argue that the standards do not reflect changes that have occurred in
the
CCS program over time, including the increasing complexity of cases and
newer mandates to coordinate care more closely with other systems such
as Medi-Cal managed care plans, special education, county mental
health,
and regional centers.
According to material provided by DHS to the
Senate Budget and Fiscal
Review Committee, case handling ratios in the three regional CCS
offices
range from 500-to-1 in the Sacramento office to over 1,000-to-1 in the
Southern California regional office. According to the material, the
Sacramento
regional CCS office requires 41 days to make an eligibility
determination,
open a case file, and authorize services, as well as five weeks to
process
treatment authorization requests.
DHS expects some administrative savings as a
result of the planned implementation
of the CMS Net project, an online information management system. This
will
free up county staff resources, particularly those devoted to billing
and
claims functions, for case management activities, but the extent of
these
savings is currently unknown. In addition, DHS is updating the CCS
staffing
standards but does not expect to have those standards in place until
late
2000.
Options to deal with this problem include:
* Requiring CCS
staffing standards to be updated
regularly and to be consistent with those used in other case managed
programs
serving families or children and adolescents.
Need for Better State Oversight and Enforcement of
Program Standards
Although DHS has issued a detailed procedures
manual for the CCS program
and issues frequent directives concerning administration of the program
to counties via program letters, it conducts very little formal
oversight
of county administration of the program to gauge compliance with
program
standards. Interviewees told SOR that county and provider site reviews
are rarely conducted, generally only in response to highly publicized
problems.
Many expressed concern that CCS administrative functions, including
program
oversight and standard setting, are understaffed at the state level. As
a result, counties routinely fail to comply with many program
standards,
including timeliness standards for eligibility determinations,
authorization
of services, and payment of claims. In some counties, large backlogs of
unpaid claims exist.
The state-county linked management information
system, CMS Net 47, being
implemented by DHS will enable it to track enrollment, services, and
program
outcomes at the county level. Currently 44 counties participate in the
system; however, efforts to include the remaining counties are hampered
by county delays in computerizing client-tracking services, a
reluctance
among some counties to participate in the system, limits in the
capacity
of the state’s hardware system, and a lack of state staffing
to assess
program outcomes.
In most counties, all claims for services to
Medi-Cal-eligible children
are submitted to the CCS county or state regional office for review and
approval and then are submitted to the Medi-Cal billing intermediary,
EDS.
With the completion of the CMS Net 47 system, all Medi-Cal claims for
counties
participating in the system will be sent directly to EDS. AB 2793 of
1994
required all independent counties to begin forwarding to EDSclaims for
services to CCS-only children submitted to EDS by January 1, 1999.
Currently,
49 counties have met this requirement.
Stakeholders also cited problems with long
backlogs in the credentialing
or recredentialing of CCS hospitals, neonatal and pediatric intensive
care
units, special care centers, and individual health care providers,
leading
to barriers to services in some areas. According to materials provided
to the Senate Budget Committee by DHS, in February 2000 a backlog of
452
facilities and providers was awaiting certification or recertification,
as well as a backlog of 104 medical therapy units.
A variety of reasons were given by persons SOR
interviewed for counties’
problems with meeting CCS timeliness standards, including difficulties
filling staffing vacancies, periodic county hiring freezes, and
understaffing,
in some cases driven by unrealistic staffing standards imposed by the
state.
Even when DHS officials are aware of problems, the lack of clear
authority
to sanction counties for failure to correct program deficiencies allows
the problems to continue.
Options to deal with these problems include:
* Expediting
implementation of the CMS Net 47 management
information system;
* Requiring all
counties to participate in the CMS
Net 47 system by a target date as a condition of receiving state
matching
funding for CCS;
* Requiring DHS to
conduct formal county site reviews
and reviews of CCS (and GHPP) credentialed providers and special care
centers
at least once every two years;
* Providing
additional funds and staffing for updating
and enforcement of program eligibility, administration, and provider
certification
standards, and for regional office eligibility determinations and
treatment
authorizations;
* Providing funding
to track and analyze program
outcomes across counties, including gauging family and provider
satisfaction
and impacts of county CCS programs on school absenteeism, emergency
room
visits, and hospitalization rates;
* Giving DHS
authority to issue corrective action
notices and to impose financial sanctions on counties for failure to
comply
with the notices.
Inadequate Attention to Family-Centered Care as a
Program Goal
Federal law and guidelines require states to
administer MCH block-grant
funded programs, which includes CCS, in a family-centered manner
– meaning
in a manner that is inclusive of families and adapted to their needs.
Despite
this mandate, the CCS program remains a difficult program for families
to understand and deal with, according to program administrators and
family
resource groups. In most counties interaction with the program is via
cursory
letters that are sometimes confusing to families. Application
procedures
and timelines are cumbersome and burdensome. Program materials,
including
applications, information packets, and notices are rarely provided in
languages
besides English. Translator services are generally limited to English
and
Spanish. Due to workloads, case managers frequently do not have time to
return calls to families who are concerned about program determinations
regarding their children. In many counties, children needing therapy
are
assigned to therapists without input from families and families are not
involved in treatment decisions. For the most part, CCS does not
provide
therapy or treatment services in the home, although traveling to a
medical
treatment unit center or provider’s office is often difficult
for children
with significant disabilities. Due to backlogs in the credentialing of
CCS providers, satellite clinics have had difficulties getting
established
in several rural areas, requiring families to travel further distances
to visit special care centers.
Families with children eligible for other
state-administered programs
and services – for example, regional center services and
special education
– face inconsistencies in eligibility standards and separate
intake procedures
for the programs. They must deal with multiple case managers, adding to
the complexities of addressing their children’s conditions.
For example,
eligibility for services under the CCS high-risk infant follow-up
program
is limited to birth to 24 months, while eligibility for services for
children
at risk of developmental disability under the Early Start program
extends
from birth to 36 months. Similarly, eligibility for special education
extends
until the 22nd birthday, while eligibility for CCS usually terminates
at
age 21.
In most cases, the only recourse for families who
are confused by or
wish to challenge a program decision is to make a formal appeal and
have
a case heard by an administrative hearing officer.
A survey of families conducted by DHS in 1998 as
part of its MCH block-grant
needs assessment also found that nearly 20 percent of families with
CCS-eligible
children have problems with transportation that make it difficult to
keep
medical appointments for their children. These range from lacking a
reliable
car or adequate bus fare to being unable to take time off work or
facing
difficulties transporting a disabled child. The same survey found that
35 percent of families ranked as very important additional parent
education
on rights and entitlements and 30 percent ranked as very important help
in getting needed services and supplies.
Family representatives pointed out that families
are disadvantaged by
a variety of financial standards and requirements. For example, under
existing
statute, families must document their incomes using the previous
year’s
income tax return, making it difficult for families whose income has
recently
declined to establish eligibility.
When a person is found eligible for Medi-Cal,
coverage is generally
retroactive for up to three months. However, family representatives
report
difficulties getting the Medi-Cal Health Insurance Payment Program
(HIPP)
to cover families’ share of private health insurance premiums
for the three
months before eligibility is established for their children. Problems
in
getting CCS to pay for copayments and deductibles under private health
insurance coverage also were cited by several groups.
County CCS administrative staff have informed SOR
that statutorily required
annual enrollment fees for families with incomes above $25,000 act as a
barrier to enrollment in some cases and are routinely waived by
counties
for hardship. These fees currently account for about 0.3 percent of CCS
revenues.
DHS has taken some steps to address the issues
outlined above, including
hiring a family coordinator to provide families’ perspectives
on program
administration issues and publishing a parent handbook that explains
the
CCS program in different languages. In addition, Children’s
Hospital Los
Angeles has received a federal MCH grant to conduct training sessions
for
families of CCS-eligible children.
Options to deal with these problems include:
* Requiring DHS and
counties to provide CCS materials
and communications – including applications, information
packets, correspondence,
and telephone contacts – in threshold languages, consistent
with Medi-Cal
managed care regulations;
* Establishing a
family ombudsperson and an 800 telephone
number where families can informally try to resolve concerns and
complaints
prior to filing formal complaints about the program;
* Requiring county
notices of CCS decisions or actions
in specific cases to provide clear notice of the action being taken,
the
reasons for the action, and the family’s appeal rights;
* Providing funds
for county CCS programs to hire
family coordinators at the county level to improve interaction between
CCS and families;
* Providing funds
for county CCS programs to contract
with family resource centers to improve interaction between CCS and
families;
* Requiring DHS to
produce informational videotapes
in several languages explaining the CCS program to be shown to families
upon enrollment in the program;
* Requiring DHS and
counties to review all program
materials and application procedures to ensure that they are
family-centered
and easy to understand;
* Requiring DHS and
the Department of Developmental
Services to develop common application forms and integrated intake
procedures
for Medi-Cal, Healthy Families, CCS and the regional centers. Develop
greater
consistency in eligibility standards and better collaboration between
different
programs serving CCS-eligible children, including CCS, regional
centers,
and special education programs;
* Requiring DHS to
establish standards for access
to home services if traveling to treatment centers or
providers’ offices
risks further complications of children’s conditions;
* Allowing families
to document their income using
pay stubs, income tax returns, or county welfare office statements,
similar
to the verification documents used in theHealthy Families program;
* Establishing a
process for electronic submission
of treatment authorization requests to expedite the review of requests
for treatment;
* Eliminating the
annual enrollment fee for participating
families;
* Establishing
clearer standards regarding access
to medical transportation services under CCS and better informing
families
of the availability of medical transportation services;
* Establishing a
Medi-Cal administrative claiming
program so counties can bill Medi-Cal for a greater variety of travel
arrangements
under CCS, including transportation provided by the family itself;
* Requiring the
Medi-Cal HIPP to pay the family share
of cost for private health insurance coverage for the two months
preceding
the date of determined CCS eligibility, similar to the policy for
regular
Medi-Cal.
Inconsistent County Application of Program
Standards
To be eligible for CCS, children must have a
qualifying medical condition,
be Medi-Cal eligible or meet family-income limits, and be a resident of
the county in which they are seeking eligibility. According to
stakeholders,
in practice, inconsistent application of the standards leads to
children
with similar conditions being covered in some counties and not in
others.
For example, stakeholders told SOR that some counties adopt relatively
liberal interpretations of the medical eligibility standards while
others
follow more restrictive interpretations. While this problem has been
partially
rectified by the recent issuance of new medical eligibility standards
that
better define which specific types of conditions are eligible for CCS,
there are still many gray areas requiring county interpretation of
standards.
Similarly, some counties require a determination
of Medi-Cal eligibility
for all applicants before admitting a child to the program, while
others
admit clients who meet medical and residence requirements pending a
Medi-Cal
determination. In practice, the Medi-Cal determination rarely affects
eligibility
for the program but instead affects the share of cost the county will
be
responsible for.
Finally, procedures and policies for treatment and
authorization requests
differ from county to county and between the state regional centers and
individual counties. Large-volume CCS providers such as academic
medical
centers and children’s hospitals indicated that they often
have to deal
with several different county eligibility and treatment authorization
systems.
Some urged that standardized forms be developed for all counties and
regional
offices for treatment authorizations and claims.
Results of focus group interviews conducted by DHS
indicate that many
families who move from one county to another have difficulty
reestablishing
services in the new county. Inconsistent application of program
standards
also burdens providers who see children from more than one county.
Many stakeholders expressed a belief that
inconsistencies in county
administration of the CCS program are the result of funding pressures
on
counties brought about by the increased county share of cost enacted as
part of California’s 1991 state-county realignment of health,
mental health,
and social services programs. Current law establishes a county
financial
maintenance-of-effort requirement of 25 percent of the 1990-91 baseline
costs of the CCS program. In addition, counties receive realignment
funds
equal to 25 percent of the historical program costs. However, existing
law also allows counties to reduce their funding contributions to below
the maintenance-of-effort level if they can certify that a lesser
amount
is needed to pay 25 percent of the program costs.
In practice, many counties have been able to
reduce their funding requirements
due to greater shifting of caseload to Medi-Cal, the $40,000 cap on
income
eligibility for the program, and the availability of enhanced federal
funds
for CCS services to children eligible for the Healthy Families program.
However, these trends are being offset in many counties by increasing
caseload
and an increasing volume of services, especially medical therapy
services.
In essence, counties must make difficult trade-offs between committing
county funds for CCS, which provides medical care for a limited number
of children with extraordinary needs, versus other health and social
service
programs.
The state’s plan to implement the
federal children’s health insurance
program (Healthy Families in California) calls for the identification
of
CCS-eligible children who are also eligible for Healthy Families. It
also
assumes enhanced federal fundingfor CCS services provided to Healthy
Families-eligible
children. The enhanced funding effectively lowers the county and state
share of cost for CCS services to Healthy Families-eligible children
from
50 percent each to 17.5 percent each (assuming a federal matching rate
of 65 percent).
In practice, counties have not been receiving the
benefit of enhanced
federal funding of CCS cases due to problems identifying Healthy
Families-eligible
children in the state’s medical eligibility data system.
Options to deal with these problems could include:
* Funding
additional regional coordination projects,
similar to the Children’s Regional Integrated Service System
(CRISS) project
in the San Francisco Bay area;
* Requiring DHS to
conduct more frequent site reviews
of county programs (see recommendation above);
* Requiring DHS to
provide training for county CCS
staff on CCS program standards and any changes in the standards. This
could
be carried out in conjunction with more frequent county site reviews;
* Establishing a
program advisory body comprised
of county, provider, and family representatives to identify and
recommend
solutions to disparities in counties’ application of program
standards
and to advise the state on changes in eligibility and provider
standards
necessary to keep the CCS program current with accepted medical
practice;
* Requiring DHS to
develop and/or disseminate best
treatment practices for specific conditions to increase consistency
among
counties in authorization decisions;
* Requiring
continuous eligibility and continuous
service delivery for clients who move from one county to another;
* Requiring
counties to grant eligibility to applicants
who are otherwise eligible while their Medi-Cal applications are
pending;
* Returning to the
25 percent county share of costs
for CCS that existed prior to realignment in 1991.
Fragmented Service Delivery as a Result of
Expansion of Managed Care
Because CCS provides medical and therapy services
related to a particular
condition and does not provide overall medical care, it must coordinate
its services with those of other providers of basic health care
services.
In the past, most children with other forms of health coverage had
fee-for-service
coverage. In these cases CCS could manage the services needed by a
particular
child. With the growth of managed care, with its gatekeeping system and
defined networks of providers, that is more difficult.
Stakeholders told SOR that, in practice, a number
of problems complicate
the coordination of CCS services with basic health care services
provided
by managed care plans. First, for children who are covered by private
managed
care plans, CCS does not provide case management and instead limits
services
to those not covered by the private coverage. The reason for this
policy
is that managed care plans use their own networks of providers and the
state believes that such plans should be responsible for both services
and case management to enrolled children with special health care
needs.
This means that before CCS will authorize a particular service or
therapy,
the other plan must first deny coverage for it. Due to the reluctance
of
plans to make outright denials of coverage in many areas, including
coverage
of pediatric subspecialty care, lab work, X-rays, durable medical
equipment,
and pharmaceuticals, this process can take weeks and often months,
while
the family waits for services. In some cases, the denials are never
provided,
leaving the family indefinitely without access to services.
Second, due to concerns about the ability of
managed care plans to provide
CCS services, these services are currently excluded (carved out) from
Medi-Cal
managed care plans until August 2005, while the state undertakes and
evaluates
pilot projects to test the impact of full capitation on CCS-eligible
children.
Until earlier this year, DHS was in the process of implementing one
such
pilot in Los Angeles County, which was expected to enroll up to 6,000
CCS-eligible
children on a voluntary basis in comprehensive managed care
arrangements.
However, LA Care, the sponsor of the pilot project, recently
discontinued
its involvement after being unable to secure supplemental funding for
case
management services. As a result, the state has little data from which
to judge whether including treatment of CCS conditions in managed care
contracts would result in better or more seamless care for CCS-eligible
children.
While many stakeholders believe that the carve out
of CCS services ensures
better access to services for children, they acknowledge that
fragmentation
of care can result. Most Medi-Cal managed care plans and plans
contracting
with the Healthy Families program must refer children with CCS-eligible
conditions to CCS for services related to their condition, while
retaining
responsibility for other basic health care services unrelated to the
condition.
Stakeholders told SOR that, in practice, this leads to frequent
cross-referrals
of treatment requests between CCS and plans and frequent disagreements
over what constitutes basic care and what constitutes care related to
the
CCS-eligible condition. CCS administrators and providers that SOR
interviewed
indicated that these cross referrals and disagreements frequently cause
significant delays in families accessing services, as well as extra
administrative
costs. For children with serious medical conditions, for whom the lines
between preventive and specialty care are often blurred, these delays
can
be harmful and even life-threatening.
Several Medi-Cal local initiative managed care
plans expressed interest
in the state pursuing additional CCS pilot projects and in the state
providing
supplemental funding for those pilots. The local initiatives pointed
out
several areas where they believe they could improve on the current
level
of care provided to CCS clients if given a chance, including greater
access
to providers as a result of higher reimbursement rates for
subspecialists,
and greater access to ancillary services such as translation,
transportation,
and home health care.
According to DHS, continuity of care for children
enrolled in managed
care plans is improving, both in Medi-Cal and in the Healthy Families
program,
as plans and providers gain more experience in implementing MOUs
governing
referral of CCS-eligible conditions between counties and the plans. The
state has also received a federal grant to implement, on a pilot basis,
a medical-home concept for CCS-eligible children, which would assign
primary
care responsibilities to either family care providers or special care
centers
depending on the nature of the condition.
Options to deal with these issues include:
* Implementing a
medical-home concept for CCS-eligible
children, in which responsibility for primary care and care
coordination
would be assigned to either primary care providers or special care
centers,
depending on the nature of the condition.
* Establishing
disincentives for managed-care plans
to abuse the CCS referral process under the existing CCS carve-out
system,
for example by over-referring to CCS non-CCS-eligible conditions.
* Requiring
External Quality Review audits of Medi-Cal
managed care plans to include an assessment of the adequacy of care
coordination
by the plans for CCS-eligible children.
* Excluding
children with more serious conditions
from mandatory enrollment in Medi-Cal managed care plans, or allowing
CCS-eligible
children to opt out of mandatory enrollment in managed care plans under
Medi-Cal, similar to the process proposed by AB 469 (Papan) of 1999,
which
was vetoed by the governor.
* Requiring DHS to
contract for a study of the medical
outcomes, family satisfaction, and health status of CCS-eligible
children
currently or previously enrolled in managed care plans for all of their
health care needs. This would include Kaiser’s geographic
managed-care
plan in Sacramento County, the three county organized health systems
that
are capitated for CCS care (Santa Barbara, San Mateo, and Solano), and
private managed care plans. This would enable DHS to better assess the
impact of managed care on children with special health care needs.
* Establishing CCS
as a standard of care for children
with special health care needs in all health plans under Knox-Keene HMO
licensing standards.
* Requiring or
encouraging counties to use blanket
or extended authorization processes for certain ongoing services to
avoid
the need for separate authorizations for each service provided.
Outdated Income Eligibility Standards
Up until 1982, eligibility for CCS was extended to
families with annual
gross incomes up to $100,000. As part of the fiscal relief package
enacted
in 1982, eligibility was lowered to $40,000. Families can qualify for
CCS
with incomes over that amount only if their medical expenses reach 20
percent
of their incomes. Over time, the effect of this reduction has been to
reduce
the number of children eligible for the program and it is most likely
one
of the reasons for the decline in the non-Medi-Cal-eligible portion of
the caseload since the early 1990s. In 1999-00, budget trailer
legislation
extended financial eligibility to families with children eligible for
the
Healthy Families program, which allows some (generally larger) families
with incomes in excess of $40,000 to be eligible for the program. But
the
same provision does not exist for non-Healthy Families-eligible
children
who otherwise meet the Healthy Families income limits (generally 250
percent
of the federal poverty level). In addition to lowering of the income
threshold,
the lack of any inflation adjustment mechanism acts to exclude more
families
from the program over time.
Other programs serving clients with significant
health and social needs
generally incorporate higher income ceilings than $40,000 and sometimes
no ceiling. For example, the Aids Drug Assistance Program (ADAP)
provides
drug therapies with no share of cost to individuals with AIDS with
incomes
below $50,000 (equivalent to an income limit of 600 percent of the
federal
poverty level). Regional center services are provided to persons with
developmental
disabilities generally without regard to family income; there is a
family
share of cost requirement for 24-hour out-of-home placement.
Options to address this include:
* Redefining
financial eligibility for CCS as a percentage
of the poverty level, similar to the approach used by other
state-administered
health programs, including Medi-Cal, Healthy Families, and the Access
for
Infants and Mothers (AIM) programs. A level of 300 percent of poverty
would
include most families who would currently meet the $40,000 limit while
providing a built-in inflation adjustment. To avoid excluding any
family
that would otherwise meet the $40,000 limit, the redefinition could
extend
eligibility to families with incomes below 300 percent of the federal
poverty
level or $40,000, whichever is greater.
* Adjusting the
$40,000 ceiling for inflation since
1982, when the standard was first imposed, as well as for future
cost-of-living
changes.
* Reestablishing $100,000 as the income
ceiling
for the program. According to the Legislative Analyst’s
Office, roughly
22,000 additional children would be eligible if this change were made.
* Eliminating the
income ceiling and instead institute
a sliding-scale fee schedule for families with incomes above a certain
level.
Need to Develop More Flexible Medical Eligibility
Standards
Eligibility under CCS is generally limited to
children with defined
medical conditions, including congenital heart defects, cerebral palsy,
cancers, craniofacial abnormalities, and HIV. The exception to this is
newborn infants who require specified neonatal intensive care services
but who do not have identified CCS-eligible conditions. A number of
health
care providers and CCS program administrators that SOR spoke with
stated
that children with a variety of medical conditions would benefit from
access
to CCS services, but don’t have diagnosed conditions meeting
CCS eligibility
criteria. An example is newborns who fail to thrive in early weeks of
life
and are not eligible for neonatal intensive care services under the CCS
neonatal care program. Many expressed a desire to see CCS medical
eligibility
eventually based on more general criteria, including functional status,
level of condition, or need for specialized services. Many see this as
a way to increase the program’s flexibility to adapt to
emerging conditions
and treatments.
In addition, some stakeholder groups expressed
interest in expanding
conditions eligible for treatment under the GHPP to include other
conditions
that continue into adulthood and have similar implications for
insurability
and the need for highly specialized and coordinated treatment to other
conditions covered by GHPP.
One option to deal with this issue is:
* Require DHS to
study the feasibility of developing
alternative medical eligibility criteria based on functional status,
level
of condition, or need for specialized services.
Conclusions
CCS is a successful and multi-faceted program
serving children with
complicated health care needs. Although the purpose and basic structure
of the program are sound, numerous growing problems prevent timely
access
to services for many CCS-eligible children, including fragmentation of
services, outdated standards, limited state oversight of the program,
and
erosion of the provider infrastructure serving the program. The
Legislature
and governor may wish to consider additional reforms and funding for
the
CCS program to ensure that eligible children receive care in a seamless
and timely manner.
Acknowledgments
The authors would like to acknowledge several
persons who provided comments
on earlier drafts of the report and valuable technical expertise. They
include Laurie Soman, Center for the Vulnerable Child, Oakland
Children’s
Hospital; Erin Aaberg Givens, Pediatric Management Group; Susan Maddox,
President and Chief Executive Officer, California Children’s
Hospital Association;
Terri Cowger, legislative representative, California
Children’s Hospital
Association and the California Children’s Lobby; Dr. Maridee
Gregory, Chief,
Children’s Medical Services Branch, Department of Health
Services; Diane
Van Maren, principal consultant, Senate Budget and Fiscal Review
Committee;
Marilyn Holle, staff attorney, Protection and Advocacy, Inc.; Hellan
Roth
Dowden, Local Health Plans of California; and Dan Rabovsky, Legislative
Analyst’s Office.
The authors also wish tothank those who
participated in SOR’s California
Children’s Services Roundtable Forum on February 4, 2000, and
whose remarks
provided a basis for many of the findings and options presented in this
report.
Finally, the authors would like to acknowledge the
comments and input
received from numerous otherpersons and organizations, including those
who agreed to be interviewed for this report. (See the appendices for
complete
listings.)
Appendix A
Medical Conditions Covered by the CCS Program
Please see hard copy of report.
Appendix B
CCS Policy Roundtable Agenda
February 4, 2000, 1:00 – 4:00
State Capitol, Room 112
Introduction
Peter Hansel, Senate Office of Research, Moderator
1:10 Adequacy of CCS Provider Networks
CCS depends on an established network of
physicians, therapists, and
hospitals to provide care to the over 100,000 children enrolled in the
program at any point in time. Currently, health care providers who
participate
in CCS are reimbursed at Medi-Cal rates for services. According to
several
sources, low reimbursement rates for CCS and Medi-Cal services are
causing
many physicians to cease seeing CCS/Medi-Cal patients or otherwise
limit
the number of patients they will treat. The result is growing waiting
times
for some subspecialty services, ranging from weeks to months, depending
upon the service. In some cases, children with conditions which are
treatable
on an outpatient basis are being hospitalized in order to receive
treatment
more expeditiously.
In addition, claims for reimbursement for CCS
services are routinely
edited by the Medi-Cal fiscal intermediary, EDS, based on the frequency
of the service for which reimbursement is being claimed and based on
whether
the visit is an initial or follow-up visit. The result is that rates
for
CCS services do not reflect that visits involving CCS-eligible children
are more complex, more frequent, and more time-consuming than visits
involving
children in general. Finally, providers report lengthy waits for claims
reimbursement in many counties.
While CCS physician rates have been augmented in
recent budgets, including
a 20 percent increase for preventive and primary care services in 1998
and a five percent adjustment in the 1999-00 budget, they are still
considerably
below standard rates for comparable services.
Presenters
Erin Aaberg Givans
Director of Government Affairs
Pediatric Management Group
Peter DuBois
President and CEO
Pediatric Management Group
Kathryn Anderson, M.D.
University Children’s Medical Group
Robert Haining, M.D.
Director of Pediatric Rehabilitation
Oakland Children’s Hospital
James Feusner, M.D.
Director of Pediatric Oncology
Oakland Children’s Hospital
Lucy Crain, M.D.
Chair, American Academy of Pediatrics, California
District
Steven Cederbaum, M.D.
Professor of Psychology and Pediatrics
UCLA
Sue Maddox
President and Chief Executive Officer
California Children’s Hospital
Association
2:00 Updating and Achieving Consistent Application of Program Standards
In the view of many stakeholders, many CCS program standards are in
need of updating. For example, the $40,000 income limit for the program
has not been updated since 1982, resulting in a declining number of
families
who meet the financial eligibility standards over time.
In addition, according to several sources, CCS
case management ratios
exceed 500 clients per case manager in most independent counties and
1,000
in the state centers serving dependent counties, far in excess of
standards
for comparable programs, such as the regional centers and the CalLearn
program. Stakeholders argue that the standards do not reflect changes
that
have occurred in the CCS program over time, including the increasing
complexity
of cases and newer mandates to coordinate care more closely with other
systems of care, including Medi-Cal managed care plans, special
education,
county mental health, and regional centers.
Many stakeholders support a more flexible and
responsive process for
updating medical eligibility standards. Many support creation of an
ongoing
standards advisory group to recommend changes in medical eligibility
needed
to keep the program abreast of changes in medical practice. Many
expressed
a desire to see CCS medical eligibility eventually based on more
general
criteria, including functional status, level of condition, or need for
specialized services as a way to increase the program’s
flexibility to
adapt to emerging conditions and treatments.
Finally, inconsistent application of program
standards results in children
with similar conditions being covered in some counties and not in
others.
According to many stakeholders, some counties adopt relatively liberal
interpretations of the medical eligibility standards while others
follow
more restrictive interpretations. While this problem has been partially
rectified by the recent issuance of new medical eligibility standards,
which better define which specific types of conditions are eligible for
CCS, there are still many gray areas requiring county interpretation of
standards.
Presenter
Laurie Soman
Center for the Vulnerable Child
Oakland Children’s Hospital
2:30 Need to Develop a More Family-Centered
Approach
The CCS program is a difficult program for
families to understand and
deal with according to program administrators and family resource
groups.
In most counties interaction with the program is via cursory letters
that
are sometimes confusing to families. Application procedures and
timelines
are cumbersome and burdensome. Program materials, including
applications,
information packets, and notices are rarely provided in languages
besides
English. Translator services are generally limited to English and
Spanish.
Due to workloads, case managers frequently do not have time to return
calls
to families who are concerned about program determinations regarding
their
child. In many counties, children needing therapy are assigned to
therapists
without input of families and families are not involved in treatment
decisions.
For the most part, CCS does not provide therapy or treatment services
in
the home, although traveling to a medical treatment unit center or
provider’s
office is often difficult for children with significant disabilities.
Families with children eligible for other
state-administered programs
and services, for example regional center services and special
education,
face problems of inconsistency of eligibility standards and separate
intake
procedures between the programs, as well as problems of dealing with
multiple
case managers, adding to the complexity of dealing with their
children’s
condition.
Presenter
Claire Gover
Matrix Parent Network and Family Resource Center
3:00 Managed Care Carve-Out Issues
With the passage of 1999-00 budget and trailer
legislation, CCS services
are currently excluded (carved-out) from Medi-Cal managed care
contracts
until August 1, 2005. While many stakeholders believe that the current
carve-out of CCS services ensures better access to services for
children,
in practice the carve-out leads to frequent cross-referrals of
treatment
requests between CCS and plans and frequent disagreements over what
constitutes
basic care and care related to the CCS-eligible condition. These cross
referrals and disagreements frequently cause significant delays in
families
accessing services, as well as extra administrative costs.
According to the Department of Health Services,
continuity of care for
children enrolled in managed care plans is improving, both in Medi-Cal
and in the Healthy Families program, as plans and providers gain more
experience
in implementing MOUs governing referral of CCS-eligible conditions
between
counties and the plans. The department has also received a federal
grant
to implement, on a pilot basis, a medical home concept for CCS-eligible
children, which would assign primary care responsibilities to either
family
care providers or special care centers depending on the nature of the
condition.
Presenters
Linda Burden, M.D.
California Children’s Lobby
Leona Butler
CEO
Santa Clara Family Health Plan
Helen DuPlessis, M.D., M.P.H.
Chief Medical Officer
LA Care Health Plan
3:45 Oversight and Enforcement of Program
Standards
Although the Department of Health Services has
issued a detailed procedures
manual for the CCS program and issues frequent directives concerning
administration
of the program to counties via program letters, it conducts very little
formal oversight of county administration of the program to gauge
compliance
with program standards. Interviewees told SOR that site reviews are
rarely
conducted, generally only in response to highly publicized problems.
Many
expressed concern that CCS administrative functions, including program
oversight and standard setting, are understaffed at the state level. As
a result, counties routinely fail to comply with many program
standards,
including timeliness standards for eligibility determinations,
authorization
of services, and payment of claims. In some counties, large backlogs of
unpaid claims exist. While DHS is in the midst of implementing an
online
management information system that will enable it to track enrollment,
services, and program outcomes at the county level, the effort is beset
by numerous obstacles, including delays at the county level in
computerizing
client tracking services, the reluctance of some counties to
participate
in the system, and the lack of state staffing to assess program
outcomes.
Presenter
Peter Hansel
Senate Office of Research
4:00 Conclusion
List of Attendees
Helen M. DuPlessis, MD, MPH
LA Care
Betsy Lyman
CMS, DHS
Maridee Gregory, MD
CMS, DHS
Arwen Chenery
Assemblywoman Susan Davis
Melissa Rodgers
Legal Aid Society of San Mateo County
Diana M. Lee
Sickle Cell Community Health Network
Jeannine Woods
Sickle Cell Community Health Network
Mary Sheehan
Valley Mt. Regional Center
Wendell Uychutin
UCPA
Cyndi Kettmann
Sutter Health
Mickey Richie
DHS – Local Liaison
Terri Cowger
California Children’s Lobby/
California Children’s Hospital
Association
Leona Butler
Santa Clara Family Health Plan
Hellan Roth Dowden
Local Health Plans of California
Richard Ikeda, MD
Health For All
Joel Cohen
California Research Bureau
Michael Dimmitt
California Health Care Association
Shawn Jones, MD
Adult Sickle Cell Program, Berkeley
Son Nguyen
Midwestern University
Virginia Knowlton
Protection and Advocacy, Inc.
Lou Vismara, MD
California State Children and Families Commission
Robin Miller
CCS Administrator, Solano County
Laurie Soman
Center for the Vulnerable Child
Children’s Hospital, Oakland
Bob Frangenberg
L.A. County Health Department
Nicole Garro
L.A. Medical Home Project
Mary Hurts
Sacramento Sickle Cell, Inc.
Robert L. Nolan, MD
CCS Contra Costa County
Robin Thomas
CCS Contra Costa County
Diana Cunnison
Contra Costa County CCS
Linda Burden, MD
California Partnership for Children
Diana Obrinsky
Alameda County CCS
Rosita Saw, Director
Santa Clara County CCS
Barbara Johnston
Kaiser Permanente
Stephen Cederbaum, MD
UCLA
James Feusner, MD
Children's Hospital Oakland
Rita Huppe
Lynn Suter and Associates
Peter DuBois
Pediatric Management Group
Kathryn Anderson, MD
University Children’s Medical Group
Naomi Meyer
Consumers Union
Jack Keating, MD
Health Net
Marilyn Holle
Protection and Advocacy
Robert Haining, MD
Oakland Children’s Hospital
Lucy Crain, MD
American Academy of Pediatrics, California
District
Sue Maddox
California Children’s Hospital
Association
Claire Gover
Matrix Parent Network and Family Resource Center
Appendix C
List of Persons Interviewed or From Whom Comments
Were Received
Erin Aaberg Givans
Director of Government Affairs
Pediatric Management Group
Marilyn Backlund
Coordinator
California Children’s Services Program
Stanislaus County
James Bartley, MD, Ph.D
Redlands, CA
Peggy Baxter
Director
Government and Community Relations
Children’s Hospital Oakland
Linda Burden, MD, MPP, MPH
California Children’s Lobby
Leona Butler
Chief Executive Officer
Santa Clara Family Health Plan
Ann Cirimele
Director
Family Resource Network
Thomas Coates, MD
Associate Professor of Pediatrics and Pathology
Children’s Center for Cancer and Blood
Diseases
Teri Cowger
Cowger and Associates
Lucy Crain, MD
Chair
American Academy of Pediatrics, California
District
Diane Cummins
Office of California Senate President Pro Tempore
John Burton
Marian Dalsey, MD
Director
Program Standards and Quality Assurance Section
Children’s Medical Services Branch
Marge Deichman
Director
California Children’s Services
Alameda County
Helen DuPlessis, MD, MPH
Chief Medical Officer
LA Care Health Plan
Juno Duenas
Executive Director
Support for Families
Robert Frangenberg
Director
California Children’s Services Program
Los Angeles County
Susan Garland
Administrator
California Children’s Services Program,
Solano County
Dale Garrel, MD
Chair
Department of Pediatrics
University of Southern California
Nicole Garro, MPH
Research Specialist
The Los Angeles Medical Home Project for Children
with Special Health
Care Needs
Claire Gover
Matrix Parent Network and Family Resource Center
Maridee Gregory, MD
Chief
Children’s Medical Services Branch
Martha Guerrero, MSW
Legislative Analyst
LA Care Health Plan
Robert Haining, MD
Director of Pediatric Rehabilitation
Children’s Hospital, Oakland
Marilyn Holle
Attorney
Protection and Advocacy
Leslie Holve, MD
Santa Rosa, CA
M.E. Hurley, MD
Department of Orthopedic Surgery
Kaiser Permanente, Fontana
Richard Ikeda, MD
Elisabeth Jameson, JD
Institute for Health Policy Studies
University of California, San Francisco
Kathy Jew, RN, MPH
Carol Kamjou, RN, MPH
Michelle Fox, CGC, MS
Division of Genetics
UCLA School of Medicine
Sally Johnson
Supervisor
California Children’s Services Program,
Imperial County
Barbara Johnston, MSNL&M
CCS Coordinator
Kaiser Permanente Medical Group
Sharon Jones, MD
Director, Adult Sickle Cell Program
Alta Bates Medical Center
Jack Keating, MD
Health Net
Kathleen Keon
Harbor Regional Center
Carol Kerfoot
Barbara Rice
California Children’s Service Program
Santa Cruz County
David Kerns, MD
Virginia Knowlton
Protection & Advocacy, Inc.
Dan Little
Fiscal Forecasting and Data Management Branch,
DHS
Sheila Lawler
Director, State Programs Compliance
Kaiser Foundation Health Plan
Elizabeth Lyman
Assistant Chief
Children’s Medical Services Branch
Susan Maddox
President and CEO
California Children’s Hospital
Association
Debra Mansfield
Bakersfield, CA
William Mentzer, MD
Professor
Department of Pediatrics
University of California, San Francisco
Patty Moore
Family First Program
Robert Nolan, MD
Medical Consultant
California Children’s Services Program,
Contra Costa County
Diana Obrinsky, MD
Medical Director
California Children’s Services, Alameda
County
Robyn Phelps
Administrator
California Children’s Services Program,
San Diego County
Diane Quinn
Program Manager
San Mateo County
Melissa Rodgers
Attorney at Law
Legal Aid Society of San Mateo County
Hellen Roth Dowden
Local Health Plans of California
Rosita Saw
Director
California Children’s Services Program
Santa Clara County
Mary Sheehan
Valley Mt. Regional Center
Laurie Soman
Senior Policy Analyst
Center for the Vulnerable Child
Oakland Children’s Hospital
Claudia Spencer
Administrator
California Children’s Services Program,
San Bernardino County
Margie Swartz
Western Center on Law and Poverty
Diane Van Maren
Prinicipal Consultant
Senate Budget Committee
Louis Vismara, MD
Commissioner
California Children and Families Commission
Nora Wells
Family Voices
Irv White
Chief
Program Support Division
Children’s Medical Services Branch
Elinor Zorn, MD
Associate Director
Valley Children’s Hospital
Julie Zumwalt
Parent Coordinator
Children’s Medical Services Branch
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