jennifer rienks, phd, gerry oliva, md, mph, ruth long ma ... … · jennifer rienks, phd, gerry...

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


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


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


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



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


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


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+)


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.


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


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


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


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


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


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


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


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


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


:

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


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


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


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


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


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


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.


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?


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


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.


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.


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


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.


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.


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



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


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


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


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.


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)



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%)


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.


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



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%


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


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


• 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%


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.


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.



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%)


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


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


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**


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%


MCHB Outcome #5: Community-based

services for children and youth with

special health care needs are organized so

families can use them easily.


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].


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.


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.




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?


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


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


CCS Covering Whole Child

From the FHOP Provider Survey 2014:

• 70% of respondents to the CCS Administrators/Medical

Consultants survey strongly or somewhat agree


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


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%


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?


Case management services


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


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.


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


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.


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


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


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


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).


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



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]


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


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


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


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


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.


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


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


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.


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


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



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


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


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


jennifer rienks, phd, gerry oliva, md, mph, ruth long ma ... … · jennifer rienks, phd, gerry...

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