Jennifer Rienks, PhD, Gerry Oliva, MD, MPH, Ruth Long MA, Lindsey Clopp, MSPH, CHES
Family Health Outcomes Project at UCSF January 6, 2015 Sacramento, CA
Be familiar with the methods used to gather
information for the needs assessment
Be updated about what is going regarding
services for children with special healthcare
needs in CA and nationally
Be updated on the key findings from the key
informant interviews, focus groups, and on-
line surveys
UCSF Family Health Outcomes Project 2
By the End of this meeting Stakeholders will:
Finalize the list of potential program priorities
Using the previously developed criteria, evaluate and rank priorities
Discuss next steps for development of Action Plans
UCSF Family Health Outcomes Project 3
1. Families of CSHCN are partners in decision making at all levels and are satisfied with the services they receive
2. CSHCN receive coordinated ongoing comprehensive care within a medical home
3. All CSHCN will be adequately insured for the services they need
UCSF Family Health Outcomes Project 4
4. Children are screened early and
continuously for special health care
needs
5. Services for CSHCN will be organized so
families can use them easily
6. All youth with special needs will receive
services needed to support the transition
to adulthood
UCSF Family Health Outcomes Project 5
Within budget and legislative constraints, determine Action priorities to be addressed during FY 2015-2020
Identify the most important and potentially effective changes CCS can make to improve services for CCS-eligible children
UCSF Family Health Outcomes Project 6
UCSF Family Health Outcomes Project 7
Title V Assessment and Planning Cycle
Convene
Stakeholders Group
Assess the Needs of CCS Families
and Identify Program Issues
Set Priorities Among Identified
Needs / Issues
Analyze Problems and
Develop Intervention
Strategies
Develop 5 Year Action
Plan
Implement Identified
Strategies / Interventions
Monitor performance
Indicators / other objectives
Stakeholders representative of key interest groups: Families, CCS County Programs, Professional and Advocacy Organizations, Managed Care Plans, other State Departments, and Academic Researchers
Stakeholders to provide input in all aspects of the needs assessment and decide priorities
UCSF Family Health Outcomes Project 8
Establish subcommittees for key informant
interviews and program/secondary data, family
survey and focus groups, provider surveys and
focus groups, and data
Stakeholder subcommittees provide input on
instruments, respondents to recruit, data
analyses and interpretation of results
UCSF Family Health Outcomes Project 9
Worked with Stakeholders to identify key issues and existing data sources
Collected additional data in an iterative process via
◦ Stakeholders
◦ Key Informant Interviews
◦ On-line Surveys
◦ Focus Groups
Review all data and findings with Stakeholders via webinars (4) and meetings and conference calls with Subcommittees (12+)
UCSF Family Health Outcomes Project 10
With the key informant interview subcommittee ◦ Developed interview questions and guide
◦ Identified and recruited participants
16 Key Informant interviews conducted from July
through September 2014
Participants included MDs, CCS Program staff,
reps. from children’s hospitals, professional
organizations, other DHCS department reps.
UCSF Family Health Outcomes Project 11
Worked with focus group subcommittee ◦ Developed interview questions and guide
◦ Identified types of groups and recruited participants
6 focus groups were conducted in November and December 2014 ◦ CCS families
2 groups in Southern CA with a total of 14 participants
1 group in Northern CA with 12 participants
◦ CCS providers 1 group in Southern CA with 6 participants
◦ CCS administrators and other managed care administrators
1 group in the Central Valley with 8 participants
1 group in the San Francisco Bay Area with 6 participants
UCSF Family Health Outcomes Project 12
Worked with survey subcommittee ◦ Developed 4 surveys using information from
stakeholders, key informants, and focus groups
◦ Facilitated pilot testing of the surveys
◦ Recruited respondents to complete the surveys
Family satisfaction survey ◦ Administered in English and Spanish
CCS provider survey
CCS administrator/medical consultants survey
UCSF Family Health Outcomes Project 13
Families – 4065 ◦ White 994 (24%)
◦ Black 209 (5%)
◦ API 313 (8%)
◦ Hispanic 2242 (55%)
Physicians – 130 of which 30 were general
pediatricians and the rest sub specialists
CCS administrator/medical consultants
survey – final N for analysis = 82
UCSF Family Health Outcomes Project 14
Region N %
North Mountain 354 9
Bay Area 554 14
Sacramento 66 2
Central Coast 404 10
San Joaquin 1,025 25
Los Angeles 195 5
Orange 527 13
San Diego 493 12
Southeast 447 11
Method of Survey
Completion N %
CCS annual paperwork 932 23
Specialty Care Center 161 4
Phone - someone called 1,492 37
Computer - Survey Monkey 561 14
Smartphone - Survey
Monkey 91 2
Other 642 16
Missing 186 5
Answer Response %
Tertiary Medical Center (Non-Kaiser) 83 67%
Kaiser Tertiary Medical Center 1 1%
Stand alone specialty clinic 6 5%
Primary care practice (private) 12 10%
Primary care practice (public) 2 2%
Federally Qualified Health Center (FQHC) 14 11%
Other 6 5%
Total 124 100%
1. Selected criteria for setting
priorities
2. Developed criterion weights
3. Use criteria to prioritize issues
UCSF Family Health Outcomes Project 17
Solicit stakeholders’ recommendations for
action plan
Work with CCS state and local staff to
develop goals and SMART (Specific,
Measurable, Achievable, Realistic, and
Time-bound) objectives
UCSF Family Health Outcomes Project 18
UCSF Family Health Outcomes Project 19
Stakeholders provided input on selecting and defined criteria at initial stakeholder meeting
Subsequent email discussion of criteria
Selected manageable number of criteria
Established weights for the criteria
UCSF Family Health Outcomes Project 20
1. Does addressing the issue positively affect
families, providers, and the program?
Definition/Concept: Addressing the issue
would increase satisfaction for one or more of
these groups – families, providers, and programs.
For example, improving access to specialists
would increase satisfaction for families; reducing
paper work burdens would improve providers
work satisfaction; improving wrap-around services
would increase program satisfaction.
Weight: 3
UCSF Family Health Outcomes Project 21
0 = Addressing the issue WOULD NOT positively affect
any group (families, providers or the program)
1 = Addressing the issue would positively affect ONE
group (families OR providers OR the program)
2 = Addressing the issue would positively affect providers
AND the program
3 = Addressing the issue would positively affect families
AND one other group (providers OR the program)
4 = Addressing the issue would positively affect ALL
THREE groups
UCSF Family Health Outcomes Project 22
2. Does addressing the issue reduce
disparities in health outcomes?
Definition/Concept: One or more
population subgroups as defined by
race/ethnicity, income, insurance status,
gender, geography, or diagnosis are more
impacted than the general group or have
poorer outcomes and that addressing the
problem would reduce unequal impacts.
Weight: 2
UCSF Family Health Outcomes Project 23
:
0 = No group is disproportionately affected by the issue
1 = One or more groups is disproportionately affected
by the problem, but the differences are not
statistically different.
2 = Statistically significant differences exist in one group
3 = Statistically significant differences exist in more than
one group
4 = Statistically significant differences exist in one or
more groups and impacts a large portion of the
affected population
UCSF Family Health Outcomes Project 24
3. Does addressing the issue enhance the continuity and coordination of care?
Definition/Concept: Enhancing continuity and coordination of care could mean making it easier for CCS children to regularly see the same provider, better coordinating of referrals among needed providers, making it easier for different providers to access and share a child’s health record, facilitating authorization and reauthorization of services; providing resources to help coordinate care and referrals.
Weight: 3
UCSF Family Health Outcomes Project 25
0 = Addressing the issue does not enhance continuity and coordination of care
1 = Addressing the issue provides some enhancement to continuity and coordination of care
2 = Addressing the issue enhances continuity and coordination of care for a small part of the population
3 = Addressing the issue enhances continuity and coordination of care for more than half of the population
4 = Addressing the issues assures continuity and coordination of care for all CCS clients
UCSF Family Health Outcomes Project 26
4. Does addressing the issue increase the administrative timeliness and efficiency of providing care to CCS families to promote the quality of care and adherence to CCS standards?
Definition/Concept: Increasing timeliness and efficiency can mean many things, including reducing the cost of care, more effectively deploying staff and other resources to save money and/or increase productivity, making it easier for families to navigate the system across counties and payers; and making it easier to administer the program.
Weight: 1
UCSF Family Health Outcomes Project 27
0 = Addressing the issue does not enhance
continuity and coordination of care
1 = Addressing the issue provides some
enhancement to continuity and coordination of care
2 = Addressing the issue enhances continuity and
coordination of care for a small part of the population
3 = Addressing the issue enhances continuity and
coordination of care for more than half of the
population
4 = Addressing the issues assures continuity and
coordination of care for all CCS clients
UCSF Family Health Outcomes Project 28
5. Does addressing the issue enhance family-
centered care? Definition/Concept: Family-centered care is a standard
of practice in which families are respected as equal
partners by health professionals. Families and providers
work together to create a care plan and families’ needs
are incorporated into the delivery of health care services.
Families also receive timely, complete and accurate
information in order to participate in shared decision-
making. Family-centered care is based on the
understanding that the family is at the center of the child’s
health and well-being and emphasizes the strengths,
cultures, traditions, and expertise that each individual
brings to the relationship.
Weight: 3
UCSF Family Health Outcomes Project 29
0 = Addressing the issue does not enhance family-centered
care.
1 = Addressing the issue partially enhances family-centered
care in
2 = Addressing the issue enhances family-centered care for
less than half of the family population of the family
population.
3 = Addressing the issue enhances family-centered care for
more than half of the family population.
4 = Addressing the issue provides enhancements for the
entire population.
UCSF Family Health Outcomes Project 30
6. Are there evidence-based/best
practices that will improve the health
outcomes of the child enrolled in
CCS? And if so are there financial
resources and/or political support to
implement these?
UCSF Family Health Outcomes Project 31
Definition/Concept: Health outcomes include physical
and mental health as well as the overall quality of life
for the child, their family, and their community. Evidence
based means support in research/evaluation literature.
Best practices have not been formally validated but are
recommended by experts or by informal evaluations of
local, state or national programs. Additionally
expanding enrollment of CCS-eligible children may
improve outcomes by providing access to needed care.
Implementing these interventions requires existing
funding or the support at the state and/or federal level
for making administrative changes or providing funding.
Weight: 3
UCSF Family Health Outcomes Project 32
0 = There are no proven or promising
practices available.
1 = There is/are practice(s) that have been
shown to have a limited positive impact on
health outcomes of the CCS-enrolled
child.
2 = There is/are a proven intervention(s) that
has/have a limited impact to improve
health outcomes of the CCS-enrolled child.
UCSF Family Health Outcomes Project 33
3 = There is a promising or proven intervention that has/have a broad impact to improve health outcomes of the CCS-enrolled child but there are not resources or political support.
4 = There are promising or proven intervention(s) that have a broad impact to improve health outcomes of the CCS-enrolled child and there is funding and/or political support to implement this/these.
UCSF Family Health Outcomes Project 34
MCHB Outcome: Families of children and
youth with special health care needs partner in
decision making at all levels and are satisfied
with the services they receive
UCSF Family Health Outcomes Project 35
Many parents very grateful for CCS
Parents confident in CCS providers
Parents have info and can help each other
More parent groups are needed
Some confusion about what services CCS covers
Everyone is always helpful and understanding. I
always feel as though my concerns are heard and
concerned.
UCSF Family Health Outcomes Project 36
If families don’t understand the program, how can they participate?
Need to get PCPs involved to provide family-centered care, can’t expect specialists to do it all and families need local care.
Need a paradigm shift to more care coordination – meeting with families, doing home visits, etc…an increase of staff is needed to allow this to happen.
Meaningful family representation on all of their committees, task force, etc. where decisions are made that affect the care of these children.
UCSF Family Health Outcomes Project 37
2005/2006
46.6% of CSCHN in CA had family centered care vs. 57.4% of CSCHN nationally
52% of CSHCN in CA with private insurance had family centered care compared to 40.6% of CSHCN with public insurance
2009/2010
61.8% of CSCHN in CA had family centered care vs. 70.3% of CSCHN nationally
65.3% of CSHCN in CA with private insurance had family centered care compared to 51.5% of CSHCN with public insurance
UCSF Family Health Outcomes Project 38
UCSF Family Health Outcomes Project 39
Overall, how satisfied are you with the CCS program on
a scale of 0 (not at all) to 10 (very)?
10 56% (2,266)
9 14% (557)
8 12% (469)
0 - 4 5% (184)
Missing 4% (181)
FHOP Survey of Families 2014
82%
Satisfied Else Percent
Service Total V Sat Sat Dis V Dis No OP V Sat Sat Dis
Medical appointments 3,232 1,950 1,019 55 27 181 60 33 3
Transportation 512 309 139 9 4 51 60 30 3
In-patient hospital 1,141 664 328 25 12 112 58 32 3
Medication 2,067 1,035 681 68 19 264 50 38 4
Medical supplies 1,179 641 336 58 22 122 54 32 7
HRIF Program 296 154 71 9 2 60 52 30 4
MTP program 1,211 714 287 53 10 147 59 27 5
Home health care 310 170 79 8 4 49 55 30 4
Audiology 478 247 136 22 4 69 52 33 5
Dental or orthodontia 885 448 267 36 4 130 51 35 5
No Services 359
N %
Yes 1956 49
No 1762 44
Do not know 295 7
Missing 52 1
Went to Special Care Center is last 12 mos.?
Satisfaction with Special Care Center…
62
31
3 2 2
65
29
2 1 3
61
31
2 2 4
0
10
20
30
40
50
60
70
Very satisfied Satisfied Dissatisfied Verydissatisfied
No Opinion
Gotappointmentsas needed
Skills andExperience ofproviders
Enough visit tomeet needs
Very Satisfied/satisfied with 3 aspects of specialist care >90%
N %
Yes 2,658 65
No 526 13
Do not know 698 17
Missing 183 5
Does child have a CCS manager?
64%
25%
2% 2% 5%
0
10
20
30
40
50
60
70
Very satisfied Satisfied Dissatisfied Verydissatisfied
No Opinion
Satisfaction with CCS Case Manager?
Definition - accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective and delivered or directed by a well-trained primary care or specialty physician who helps to manage and facilitate essentially all aspects of care for the child
UCSF Family Health Outcomes Project 43
Some problems accessing primary care
Lack of paneled primary care providers in rural areas
Delays accessing specialty care
Lack of available specialists
Lack of paneled mental health providers
Use of ER services because of lack of access to timely care
Delays in getting DME and kids having outgrown DME when it arrives
Lack of timely DME leading to delayed discharges
UCSF Family Health Outcomes Project 44
Poor communication and coordination between primary and specialty care providers from the parent perspective
Parents playing a big role in coordinating care for their child
Many barriers to physician participation in CCS – delays in payments, complex paper work, challenges dealing with Medi-Cal Managed care plans
Reductions of staff at the state level to administer CCS and provide leadership, enforce standards, panel physicians
Budget cuts and loss of trained staff at the local level
UCSF Family Health Outcomes Project 45
How can you ask a MediCal provider, being paid $20/visit, to manage all of the care? Some do it on their own time. It would require caring for the whole child [and be]…incentivized.
Generally speaking, no true adherence to the medical home concept. We are never going to control cost and guarantee quality until we understand the need to do this.
It is an enormous failing of the current system.
If [we] try to do this for CCS kids, CCS will be out of business in two years. The idea is unrealistic given the current financing and program structure. Everyone wants to do it, but no one can do the financing.
UCSF Family Health Outcomes Project 46
61.7% of CSHCN lack a medical home (NS-CSHCN CA data 2009/2010) vs. 57% nationally
African Amer. and Latino CSHCN significantly more likely to lack medical home than white CSHCN
70% - CA average for primary care provider listed for CCS clients (CMSNet) in 2014 vs. 87% in 2010)
UCSF Family Health Outcomes Project 47
UCSF Family Health Outcomes Project 48
California State Ranking on
Medical Home Overall and
Subcomponents
Overall Medical Home 44th
Care Coordination 46th
Family-Centered Care 44th
Problems Accessing
Needed Referrals 50th
94%
4% 1% 0
20
40
60
80
100
Yes No Missing
8%
36%
22%
14%
8% 11%
0
5
10
15
20
25
30
35
40
0 1 2 3 4 5 +
Have a primary care provider?
Number of specialist seen in last 12 mos.
5%
19%
21%
14%
14%
14%
6%
11%
0 10 20 30
0
1
2
3
4
5 to 6
7 to 9
10+
Number of specialist visits in last year?
From the National Survey of CSHCN 2009/2010
CSHCN needing a referral for specialty care and having difficulty getting it: 33.9% in CA vs. 23.4% Nationwide
From the CCS Family Survey
Saw specialist when needed 71%
Specialist always coordinated with PCP 58%
Had delays with referrals to specialists 29% (always /usually 10%)
UCSF Family Health Outcomes Project 50
White, Non-
Hispanic
Black, Non-
Hispanic
Hispa
nic
Other, Non-
Hispanic
California % 22.0 36.8 43.8 32.6
Nationwide % 20.7 20.8 32.8 25.6
FHOP CCS Family Focus Groups 2014
Why should a CCS child on MediCal have to wait 6
months see a specialist whereas if you have private
insurance or cash [out of pocket], you can be seen right
away? A lot of people then go to the ER because they
cannot wait for an appointment. This clogs the ER,
doctors there aren’t trained to care for CCS kids, so they
are usually admitted and the cost of admission and
treatment is so much more than preventing the child
from going to the ER in the first place.
UCSF Family Health Outcomes Project 51
From the CCS Provider Survey
44% consider their practice to be a medical
home for CCS clients
43% would need additional resources to
become a medical home and 13% have
everything they need to become a medical
home
UCSF Family Health Outcomes Project 52
UCSF Family Health Outcomes Project 53
Who should provide a medical home to CCS clients From the FHOP CCS Administrators/Medical Consultants Survey 2014
Answer – check all that apply For clients with chronic complex
conditions
For clients with conditions of
limited complexity or duration
Pediatric Primary Care Provider 87% 91%
Family Medicine PCP 35% 58%
Federally Qualified Health Centers (FQHC's) 44% 60%
Pediatric Sub-Specialist 43% 25%
Special Care Center 46% 15%
Other 11% 6%
A Community Clinic that is not an FQHC 17% 38%
UCSF Family Health Outcomes Project 54
Never OccasionallyVery
OftenAlways Total N Mean
CCS Paneled Audiologists 5% 28% 24% 43% 58 36
CCS Paneled Physical Therapists 14% 24% 32% 31% 59 36
CCS Paneled Occupational Therapists 14% 24% 31% 32% 59 36
CCS Paneled Primary Care Providers 21% 35% 30% 14% 57 35
CCS Paneled Registered Dietitians 19% 25% 15% 42% 53 36
CCS Paneled Respiratory Therapists 32% 16% 12% 40% 50 36
CCS Paneled Social Workers 29% 15% 8% 48% 52 36
CCS Paneled Orthodontists 17% 21% 17% 45% 53 36
CCS Paneled Otolaryngologists 29% 23% 17% 31% 52 36
CCS Paneled Pediatric Neurologists 9% 35% 30% 26% 54 36
CCS Paneled Endocrinologists 15% 23% 23% 40% 53 36
CCS Paneled Plastic Surgeons 16% 33% 22% 29% 51 36
CCS Paneled Pediatric Cardiologists 28% 40% 12% 20% 50 35
Other CCS Paneled Provider (please specify) 22% 15% 26% 37% 27 36
How often are the following types of providers lacking for your CCS
clients?
From the FHOP CCS Administrators/Medical Consultants Survey 2014
(Rate from 0-5 with 5 = being very significant) Ave. N
Amount of resources needed to coordinate services 3.6 94
Amount of accessible and available resources (e.g. social
services, mental health, respite care) for kids
3.4 96
Complexity of and time for care needed by CCS kids 3.4 93
Working with managed care 3.4 94
Medi-Cal outpatient reimbursement rates 3.0 95
Amount/difficulty of paper work for reimbursement 2.8 91
CCS reimbursement rates for conditions 2.6 86
Delay in payments for services provided to CCS kids 2.5 89
Delays in state processing of applications to become a
CCS paneled providers
2.3 82
PCP’s ability to access electronic information from the
specialty care providers that are also serving the same
CCS children
2.3 87
UCSF Family Health Outcomes Project 56
Question Very Helpful Helpful
Only a little helpful
Not helpful
Don't Know/ Not Sure Total N
b. Expanding telehealth options for CCS children, particularly in rural areas 42% 17% 10% 8% 23% 60
d. Consider strategies to recruit/graduate more pediatric sub-specialists in California 60% 22% 2% 2% 15% 60
c. Raise Medi-Cal/CCS rates to encourage higher participation in the program 75% 10% 2% 2% 12% 60
Strategies to increase the number of CCS paneled
providers From the FHOP CCS Administrators/Medical Consultants Survey 2014
Problems getting DME
16% of respondents to the
family survey had problems
getting DME
Hospital discharge delays are a
VERY frequent problem due to
delays in obtaining DME.
Nothing happens (no progress)
on even simple DME such as
home 02 occurs after
Wednesday until the next week
UCSF Family Health Outcomes Project 57
• Teaching families the use of DME has been a problem for two
reasons: scheduling has not been family friendly. Teaching is not
offered in family's language.
DME issues that present problems for patients – Provider Survey
DME issues that present problems for patients – CCS Admin. Survey
56%
42%
27%
4%
12%
29%
23%
35%
50%
33%38%
25%
13% 12%15%
23% 21%16%
2% 4%0%
13%
4% 6%6% 8% 8%
27% 25% 24%
0%
10%
20%
30%
40%
50%
60%
a. Too few DMEproviders willing towork with Medi-Cal
due to lowreimbursement
rates
b.DME providersrefusing to provide
certain kinds ofequipment due to
low reimbursementrates for thatequipment.
c. Client dischargesbeing delayed
because of delaysin getting DME (e.g.ventilators, apneamonitors, wheel
chairs).
d.Hospitals orfamilies having topurchase DME sothat clients can be
discharged in atimely manner.
e.Clients missingschool due to
delays in getting orrepairing needed
DME.
f.DME providersrefusing to repair ormaintain equipment
that they weren'tauthorized to
provide.
Frequently a problem Occasionally a problem Rarely a problem Never a problem Don't Know/Not Sure
Administrative Processing Times: The good news
2 Days or Less 3 days to 1 wk
Within 1
week
Within 2
weeks
Referral Until opened 7.9% (4651) 31% 15294) 39% 65%
Referral until first SAR
auth 8.6% (4071) 30% (13999) 39% 65%
SAR request to auth. 40.2% (185816) 25%(117.038) 65% 79%
HHA SAR to Auth 40.6% (1205) 33% (983) 74% 86%
Wheelchair SAR to
auth. 37.6% (1074) 21% (604) 58% 73%
UCSF Family Health Outcomes Project 60
Source: CMSNet 2014
Top 3 Priorities based on Frequency
1. Inadequate reimbursement for providers and families
2. Expansion of eligible conditions and services while eliminating one-time patients (e.g., fractures) that are consistent applied across counties
3. Extending coverage of young adults with some chronic conditions beyond age 21 years, at least until 25 years, and some conditions until 65 years
MCHB Outcome #3: Families of CSHCN have
adequate private and/or public insurance to
pay for the services they need.
UCSF Family Health Outcomes Project 62
From Families:
For some families, having private insurance and CCS makes it harder to get care
Medi-Cal and private insurance don’t understand the needs of CSHCN
Having to pay out of pocket for expenses they can’t get covered
Medi-Cal workers even more overwhelmed than CCS and is a harder system to deal with
When a different claim was recently denied for my son, we didn't even bother fighting it, but rather paid out of pocket, to avoid the frustration of trying to get an approval with CCS.
UCSF Family Health Outcomes Project 63
UCSF Family Health Outcomes Project 64
Overall Hispanic White Black Other. Non-
Hispanic
California %: 37.2 38.8 34.4 47.8^ 33.6
Nationwide %: 34.3 37.9 33.0 35.9 33.9
Current Insurance Inadequate Overall and by Race
33.9
20.2
0
5
10
15
20
25
30
35
40
Public Insurance Private Insurance
Four or More Functional Difficulties
69.1
54.8 50.6
23.4
0
10
20
30
40
50
60
70
80
Private insuranceonly
Public insuranceonly
Both public andprivate insurance
Uninsured
CA CSHCN with public insurance are more
likely to experience 4+ functional difficulties
Privately insured CSHCN more likely than
publicly insured CSHCN to receive routine
preventive medical and dental care visits
(69.1% vs. 54.8%)
UCSF Family Health Outcomes Project 65
42.4%
68.9%
0%
10%
20%
30%
40%
50%
60%
70%
80%
Public insurance Private insurance
Privately insured CSHCN are more likely than publicly insured
CSHCN to receive all components of family-centered care
• Additionally, 49.9% of privately insured and only 29.7% of publicly
insured CSHCN receive coordinated, ongoing, comprehensive care
within a medical home
• More than twice as many CSHCN with public vs. private insurance have parents who had to stop or cut back on work to care for their child (36.1% vs. 16.1%)
Cost related barriers to accessing care
From the FHOP Survey of CCS
Administrators/Medical Consultants 2014
UCSF Family Health Outcomes Project 66
Major
Problem
Moderate
Problem
Small
Problem
Not a
Problem
Don't
Know/
Not Sure Total N
a. Availability of resources to support parents traveling to and from
the hospital and medical appointments. 39% 33% 19% 6% 4% 70
b. Out-of-pocket expenses for family services 27% 37% 24% 3% 9% 70
c. Problems accessing primary care for child (e.g. share-of-cost Medi-
Cal, co-pays/deductibles, no primary care coverage) 26% 31% 26% 7% 10% 70
MCHB Outcome #4: Children are screened
early and continuously for special health care
needs
UCSF Family Health Outcomes Project 67
Percent of children identified as having special health care
needs
2001 2005/2006 2009/2010
California % 10.3* 9.9* 10.6*
Nationwide % 12.8 13.9** 15.1**
UCSF Family Health Outcomes Project 68
CSHCN in California • Approximately 14.5% of
all children age 0-17 – about 1 in 7 children
• Equals an estimated 1.4 million CSHCN in California
Non-
CSHCN CSHCN
CSHCN with Complex
Health Needs
Age
0-5 years 36.2% 18.8% 18.1%
6-11 years 32.0% 38.0% 38.8%
12-17 years 31.8% 43.2% 43.1%
Sex Male 49.4% 58.1% 60.4%
Female 50.6% 41.9% 39.6%
Race/
Ethnicity
Hispanic 25.2% 17.4% 18.9%
White, NH 51.5% 56.8% 55.9%
Black, NH 12.8% 16.4% 16.0%
Other, NH 10.5% 9.3% 9.2%
Household
Income
Level
0-99% FPL 22.2% 23.6% 27.5%
100-199%
FPL 21.5% 21.6% 22.4%
200-399%
FPL 28.3% 27.9% 26.7%
400% or more 28.0% 26.9% 23.4%
UCSF Family Health Outcomes Project 69
MCHB Outcome #5: Community-based
services for children and youth with
special health care needs are organized so
families can use them easily.
UCSF Family Health Outcomes Project 70
Inconsistencies between Counties in services covered and in wait times for authorizations
CCS deals with conditions, not the whole child
Challenges in care coordination due to carve out
Desire for ‘whole child’ approach
Variations between counties in size of case load for case management
Standards/numbered letters are out of date and not keeping pace with changes in medicine
CCS should re-examine eligibility, particularly for less complex, short term conditions and NICU care without a CCS Diagnosis
Some counties have an implicit look at their balance sheet and others are just doing [what is needed].
UCSF Family Health Outcomes Project 71
Biggest area [of discrepancy] has to do with medical eligibility because of ambiguity in regulations…seems to be more variation between Northern and Southern California [regarding] practice differences. Some things are considered eligible in the North but not in the South…culture difference.
Different counties will interpret the number letters differently. Physicians within the same county do not always agree on interpretation…[they] don’t always understand medical eligibility.
◦ Example: child in one county will receive a wheelchair while in another county the same child would not receive a wheelchair for the same condition.
Families find themselves in the middle of trying to figure out how to get care for their child instead of caring for their child. They end up in the middle of disagreements between agencies with no ability to resolve the issue.
UCSF Family Health Outcomes Project 72
Need to have ability to apply standards in a way that makes sense…different places have different conditions…can’t be rigid…need some flexibility. It is important to permit variation because California is a big state and important that counties have the flexibility to respond to local needs.
What is missing is any analytic capacity to see what is useful variation versus variation based on inefficiency and bad practices.
It would be great if the State could provide a more detailed guide as to how the regulations are to be interpreted.
UCSF Family Health Outcomes Project 73
UCSF Family Health Outcomes Project 74
FHOP Survey of Families 2014
50
10
15
3
23
49
12 14
2
22
46
12 15
3
24
48
14 11
3
24
48
15
10
2
24
0
10
20
30
40
50
60
Always Usually Sometimes Never Missing
White Black API Hisp Others
From the FHOP Survey of CCS Families 2014
How often child’s services are coordinated that makes them easy to use?
UCSF Family Health Outcomes Project 75
27%
32%
39% 42%
40%
30%
16% 18%
11%
15%
10%
21%
0%
5%
10%
15%
20%
25%
30%
35%
40%
45%
a. State capacity to enforceCCS regulations
b. State capacity to conductfacility assessments
c. State capacity to quicklyprocess applications tobecome a CCS paneled
provider
Major Problem Moderate Problem Small Problem Not a Problem
State capacity to ensure CSS children received high quality and well
organized services
(Frequencies after removed roughly 20% of respondents that didn’t know/weren’t
sure about state capacity)
From the FHOP Survey of CCS Administrators/Medical Consultants 2014
UCSF Family Health Outcomes Project 76
4 4 %
1 8 %
3 1 %
1 1 %
9 %
4 9 %
2 0 %
5 %
3 %
5 %
8 %
1 1 %
1 7 %
5 2 %
5 2 %
7 8 %
6 4 %
8 2 %
8 0 %
3 4 %
2 8 %
0 % 1 0 % 2 0 % 3 0 % 4 0 % 5 0 % 6 0 % 7 0 % 8 0 % 9 0 %
H ir in g f re e ze s in th e lo c a l C C S p ro g ra m
L o ss o f s k i lle d s ta f f f ro m th e lo c a l C C S p ro g ra m
D if f ic u lt ie s re c ru i tin g s ta ff fo r th e lo c a l C C S p ro g ra m
S h o r ta g e o f p h y s ic ia n s , in c lu d in g C C S p a n e led p e d ia t r ic ia n s
a n d s u b s p e c ia l is ts
S h o r ta g e s o f C C S p a n e le d th e r a p is ts
L o ca l C C S s ta f f h a v in g to s p e n d m o re t im e o n u t i li za t io n
re v iew a n d le s s t im e o n c a s e m a n a g e m e n t th a n th e y d id
p re v io u s ly
S ta f f a t th e C h ild re n ’s H o s p ita ls th a t s e rv e yo u r C C S c lie n ts
h a v in g to s p e n d m o re t im e p u s h in g th ro u g h a u th o r iz a t io n s to
g e t p a id re s u lt in g in le s s t im e a v a ila b le fo r c a re c o o rd in a t io n
D o n ' t k n o w / N o t s u re N o Y e s
Potential issues impacting local capacity to ensure CSS children received high quality
and well organized services FHOP Survey of CCS Administrators/Medical Consultants 2014
UCSF Family Health Outcomes Project 77
CCS Covering Whole Child
From the FHOP Provider Survey 2014:
• 70% of respondents to the CCS Administrators/Medical
Consultants survey strongly or somewhat agree
UCSF Family Health Outcomes Project 78
FHOP Survey of CCS Providers 2014
26%
38%
15%
11%
3%
7%
0%
5%
10%
15%
20%
25%
30%
35%
40%
StronglyAgree
SomewhatAgree
Neutral Somewhatdisagree
StronglyDisagree
Don'tKnow/Not
Sure
The state should re-examine CCS medical eligibility to focus on more complex
conditions that need longer term, intensive case management and care coordination
UCSF Family Health Outcomes Project 79
CCS Case Loads (from FHOP Survey of CCS Administrators/Medical Consultants
2014)
Case Load
% of Independent
County responses
(N = 42)
50 - 300 14%
301 - 400 26%
401-500 24%
501-600 24%
601-800 10%
801-1100 2%
Case Load
% of Dependent
County responses
(N = 19)
50 or less 16%
51 - 100 26%
101 - 200 21%
201-300 16%
301 to 440 21%
UCSF Family Health Outcomes Project 80
Strongly
agree
Somewhat
agree Neutral
Somewhat
disagree
Strongly
disagree
Don't know/
Not sure Total N
The provision of case management and care coordination services
should be tiered based on the child's medical condition, the
family's capacity to meet the child's needs and the social barriers
they encounter (poverty, low education level, lack of
transportation, non-English speaking, etc.). 41% 28% 13% 6% 6% 7% 54
The provision of case management and care coordination services
should be based ONLY on the child's medical condition. 16% 5% 11% 32% 29% 7% 56
Does your county current tier Case Management Services based on:
FHOP Survey of CCS Administrators/Medical Consultants 2014
Yes No
Don't Know/
Not Sure Total N
Medical conditions 30% 62% 8% 63
The families capacity to meet the child's needs 27% 61% 13% 64
Social barriers the family encounters (poverty, low education level, lack of
transportation, non-English speaking, etc.)? 28% 61% 11% 64
Should case management services be tier?
UCSF Family Health Outcomes Project 81
Case management services
UCSF Family Health Outcomes Project 82
54%
22%
9% 1% 2%
12%
0%
10%
20%
30%
40%
50%
60%
StronglyAgree
SomewhatAgree
Neutral Somewhatdisagree
StronglyDisagree
Don'tKnow/Not
Sure
The Medi-Cal provider network of primary and specialty care providers is shrinking and leaving fewer provider
choices for families
• Using a scale of 0-5 with 0 being not a barrier and 5 being a very significant barrier, physicians gave “Working with managed care plans (e.g., Approval for services/special tests or procedures, reimbursement process)” a score of 3.35. This was seen as a bigger barrier than Medi-Cal rates.
FHOP Survey of CCS Providers 2014
UCSF Family Health Outcomes Project 83
12%
5%
12%
25%
27%
36%
31%
25%
34%
19%
31%
8%
14%
12%
10%
0% 5% 10% 15% 20% 25% 30% 35% 40%
Policies to refer all pediatric cases to CCS fordenial before acting on them, regardless of
condition.
MMCP insisting on receiving a denial ofservices from CCS before authorizing
services for a specific child's Non-CCSeligible conditions.
Delays in CCS clients recieveing services asathe MMCP and the local CCS programs fo
back and forth figuing out who is responsiblefor authorizing and paying for the services.
Don't Know/Not Sure Always Very Often Occasionally Never
When working with Medi-Cal Managed Care plan serving your CCS
clients, how often do you encounter:
FHOP Survey of CCS
Administrators/Medical Consultants 2014
MCHB Core Outcome #6: Youth with special
health care needs receive the services
necessary to make transitions to all aspects of
adult life, including adult health care, work,
and independence.
UCSF Family Health Outcomes Project 84
Very hard to find a provider to see CCS clients as
they age out
Lack of transition planning
No organized system of care for YSCHN to
transition into
Lack of insurance coverage a major problem
Unmitigated disaster…there is a no transition,
your services end on your birthday
UCSF Family Health Outcomes Project 85
From Families I am terrified of what’s coming when my daughter turns 20…it’s an
extreme problem that no one is telling anyone how to do it.
I’m nervous because I’m afraid of all of the things I am going to lose. Just because they’ve aged, their medical needs haven’t changed.
From CCS Administrators We've augmented our annual transition fair to a transition
conference, which entails transitioning into and out of CCS.
We have a parent liaison that works closely with our families and helps them with any problems they may experience in finding community resources. She also attempts to contact each young adult who is transitioning out of CCS to assist them with any transitioning problems or questions they may have.
UCSF Family Health Outcomes Project 86
NS-CSHCN - 37% of youth in CA achieved this
outcome
FHOP survey of Physicians
63% who worked with transition age youth
report it is very hard to find a new PCP
69% who worked with transition age youth
report it is very hard to find a new specialty care
provider
UCSF Family Health Outcomes Project 87
34% (1343) of respondents have a child 14 or older that is/was covered by CCS
◦ 28% of those report providers talking to them about how their child’s health care needs will be met when he/she turns 21
◦ 15% of those with a child 14+ report CCS helping to find an adult provider
Of those reporting CCS help finding an adult provider, 80% were successful
◦ 71% of those with a child 14+ would find more information on transition helpful
UCSF Family Health Outcomes Project 88
Suggestions to improve transition From the FHOP Survey of CCS Physicians 2014
88% of respondents believe that the multidisciplinary team for transition age CCS clients should include both pediatrician(s) and an internist to help facilitate transition
58% of respondents believe that eligibility for certain CCS conditions should be extended to 65 years
80+% of respondents agree that those aging out of CCS would benefit from assistance finding adult primary and specialty care providers
UCSF Family Health Outcomes Project 89
AMCHP System Outcome #7: All CYSHCN and
their families will receive care that is culturally
and linguistically appropriate (attends to
racial, ethnic, religious, and language
domains).
UCSF Family Health Outcomes Project 90
Access to Interpretation Services
23% of families reported needing interpretation services to communicate with their child’s medical provider always are usually in the last 12 months
76% of families report that an interpreter is usually or always available when they saw a CCS specialist in the last year
18% report interpreter being only sometimes available, and 6% report never available
UCSF Family Health Outcomes Project 91
FHOP Survey of Families 2015
There is always someone who speaks Spanish, a nurse or receptionist that works there.
[There have been] times when no one [at the appointment] speaks Spanish and there is no way for us to communicate [with the provider]. It is extremely difficult with a medically fragile child and trying to find someone to help us with translation.
Don’t know the language [jargon], words to use to ask the questions to get the services needed.
People don’t understand the clause [of the policy].
[After my child died] I was hired by CCS to be a parent advocate to help change the language because it [the language used for CCS documents, particularly denial letters] gives the feeling of no hope and it should be much more clear as to who is responsible for what. [Language not changed because it was a state not local issue]
UCSF Family Health Outcomes Project 92
UCSF Family Health Outcomes Project 93
Priority: Increase family access to educational
information and information about accessing CCS
services, including what services are covered by
CCS, availability of and access to services offered
by health plans, and family support groups
Priority: Increase family partnership in decision
making and improving satisfaction with services
Priority: Establish a state-funded CCS parent
advisory committee to provide ongoing input for
continuous quality improvement
UCSF Family Health Outcomes Project 94
Priority: Increase number of family-centered medical homes for CSCHN and the number/% of CCS children who have a designated medical home, and have CCS develop standard/regulations for certifying medical homes for CSHCN
Priority: Increase reimbursement rates for Medi-Cal and CCS services
Priority: Reassess which conditions should be CCS eligible
UCSF Family Health Outcomes Project 95
Priority: Increase access of CCS children to 24-7 medical consultation and urgent care services from the child’s usual sources of primary and specialty care to decrease unnecessary ER visits and hospitalizations
Priority: Increase the use of technology (i.e.
telehealth) to expand access to CCS paneled providers
Priority: Increase timely access of CCS children to
durable medical equipment
UCSF Family Health Outcomes Project 96
Priority: Expand the number of qualified providers participating in the CCS program, e.g., medical specialists, primary care physicians, audiologists, occupational and physical therapists, and nutritionists
Priority: Increase access of CCS children to
preventive health care services (primary care, well child care, immunizations, screening) as recommended by the AAP and develop data system to track
UCSF Family Health Outcomes Project 97
Priority: Increase access to CCS services by
increasing the financial eligibility limit ($40,000
limit)
Priority: Implement a system of standards of
service delivery for all children with CCS medically
eligible conditions regardless of insurance
coverage.
UCSF Family Health Outcomes Project 98
Priority: Develop and implement strategies to
facilitate reimbursing providers in a more
timely fashion.
Priority: Develop and implement to
identify/create IT and other solutions to
facilitate more rapid determinations of
eligibility and authorizations and
communication between CCS and providers
UCSF Family Health Outcomes Project 99
Priority: Work with Medi-Cal at the state level to
establish more efficient policies and procedures
for how Medi-Cal managed care plans work the
CCS program (i.e. need from denials from CCS) to
reduce ‘ping ponging’ between providers and
payors
Priority: With adequate funding, have CCS cover
the whole child instead of just care for the child’s
CCS eligible medical condition
UCSF Family Health Outcomes Project 100
Priority: Increase the capacity of the State CCS program to more quickly panel providers and make eligibility and authorization determinations, to update and enforce CCS standards, and to work with Counties to adopt strategies and best practices to reduce variation between Counties and implement administrative efficiencies.
UCSF Family Health Outcomes Project 101
Priority: Increase access to transition services for CCS youth, 17-21 years of age, including help with finding adult primary and specialty care providers
Priority: Work with medical providers to identify methods, materials and protocols to increase transition planning services provided to CCS youth
Priority: Expand CCS eligibility for certain conditions (i.e. sickle cell anemia) until age 25
UCSF Family Health Outcomes Project 102
Develop strategies to ensure the availability of
translation services for all CCS clients when
needed
Establish dedicated funding for counties to employ
a parent liaison to help CCS families navigate the
system, with a particular focus on non-English
speaking families
UCSF Family Health Outcomes Project 103
UCSF Family Health Outcomes Project 104
Physician
Supply
Access to Care
Cost of care
Budget cuts, Reduced staff, delays in paneling
Lack of Primary Care/ Medical
Home
Select recorder to enter info into the laptop
Select recorder for butcher block
Select presenter to report back for the group
UCSF Family Health Outcomes Project 106
Review draft list of priorities and:
◦ Add priorities if needed
◦ Delete priorities if not needed
◦ Reword listed priorities
GOAL: Manageable list of priorities
for Stakeholder’s to rank
UCSF Family Health Outcomes Project 107
Additional analyses of data for top priority areas
Inclusion and sharing of additional data – i.e. CA
AAP survey on caring for CSHCN
Continued involvement of stakeholders and state
and local CCS staff in the development of action
plans
Establish performance measures to evaluate
implementation of action plans
UCSF Family Health Outcomes Project 108
UCSF Family Health Outcomes Project 109