age of ccs child - family health outcomes project · ccs family satisfaction survey results...

Appendix 8a CCS Family Satisfaction Survey Results (English & Spanish combined)

CCS Family Satisfaction Survey 2014 with Results

Please fill out this survey if you or your child is in California Children’s Services (CCS). The California Children’s Services Program (CCS) is a health care program for some health conditions. CCS gets requests from your child’s doctor(s). These requests are about health care services your child needs for some health conditions. CCS approves services. Who pays for CCS services? Services are paid by Medi-Cal [Federal] and the State of California, or California and the county you live in. This survey is about the CCS program. We need your help to improve the CCS program. The Family Health Outcomes Project (FHOP) at the University of California, San Francisco will conduct this survey. FHOP wants to know what you think about CCS. How well does CCS meet the health needs of your child? No answer will be linked to your name. You may answer all or skip any question(s) you want. If you are 18 years of age or older and will answer this survey for yourself, we mean you when we say “your child.” Please answer each question based on you as a CCS patient. 1. How old is your child?

• Newborn-5 years old • 6-10 years old • 11-13 years old • 14-16 years old • 17-21 years old

2. Which of the following categories best describes the race or ethnicity of your child? (select only 1 answer)

28% 23%

15% 15% 19%

0

5

10

15

20

25

30

Age of CCS Child

Newborn-5 yearsold

6-10 years old

11-13 years old

14-16 years old

1 CCS Needs Assessment – Family Satisfaction Survey Results UCSF Family Health Outcomes Project


• White or Caucasian • Black or African American • Asian, Pacific Islander, or Southeast Asian • Hispanic, Latino/Latina, or Spanish • Native American, American Indian, Aleut, or Eskimo • Multiracial • Other (Please specify)

3. What county does your family live in?

• Alameda • Alpine • Amador • Butte • Calaveras • Colusa • Contra Costa • Del Norte • El Dorado • Fresno • Glenn • Humboldt • Imperial • Inyo • Kern • Kings • Lake • Lassen

• Los Angeles • Madera • Marin • Mariposa • Mendocino • Merced • Modoc • Mono • Monterey • Napa • Nevada • Orange • Placer • Plumas • Riverside • Sacramento • San Benito • San Bernardino

• San Diego • San Francisco, City

and County • San Joaquin • San Luis Obispo • San Mateo • Santa Barbara • Santa Clara • Santa Cruz • Shasta • Sierra • Siskiyou • Solano • Sonoma • Stanislaus • Sutter • Tehama • Trinity

24%

5% 8%

55%

8% 0

10

20

30

40

50

60

Race/Ethnicity of CCS Child

White

Black

Asian/PI

Hispanic

Other



• Tulare • Tuolumne

• Ventura • Yolo

• Yuba

N %

Region 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

4. A primary care doctor is the one your child would see if he or she needs a check-up or gets sick or hurt. Does your child have a primary care doctor? • Yes • No • Don’t know/not sure



5. Specialists are doctors like surgeons, heart doctors, allergy doctors, skin doctors, and other

doctors who focus in one area of health care. How many specialist doctors has your child seen in the last 12 months? • 0 None • 1 specialist • 2 • 3 • 4 • 5 or more specialists

6. How many times did your child see a specialist(s) in the last year?

• Please enter number here:____________________________________

94%

4% 1% 0

20

40

60

80

100

Yes No Missing

8%

36%

22% 14%

8% 11%

05

10152025303540

0 1 2 3 4 5 +



7. In the last 12 months, how often was your child able to see a specialist when needed?

• Always • Usually • Sometimes • Never • Not Applicable

8. In the last 12 months, how often did you feel that a specialist and your primary care doctor were working together to provide care for your child? • Always • Usually • Sometimes • Never • Not Applicable

5% 19%

21% 14% 14% 14%

6% 11%

0 10 20 30

01234

5 to 67 to 9

10+

72%

15% 11% 2%

0

20

40

60

80

Always Usually Sometimes Never



SPECIAL CARE CENTERS Special Care Centers are health clinics at hospitals. These special clinics have teams for coordinated care. These teams of experts are doctors, nurses, social workers, nutritionists, and more. Examples of centers include Cardiac centers, Cystic Fibrosis Centers, and Lung Disease Centers. Teams at the specialty care center evaluate the child and make a family-centered health care plan. This plan helps the child get timely, needed care.

9. Did your child go to a special care center in the last 12 months?

• Yes • No • Don’t know/Not sure

N %

Yes 1956 49 No 1762 44

Do not know 295 7 Missing 52 1

10. In the past 12 months, how satisfied were you with these services that your child got at a

Special Care Center? • Got appointments as needed?

• Very satisfied • Satisfied • Dissatisfied • Very dissatisfied • No Opinion • Not applicable

• Got to see specialty care doctors with the skills and experience needed?

• Very satisfied • Satisfied

58%

19% 14% 8% 0

10

20

30

40

50

60

70




• Dissatisfied • Very dissatisfied • No Opinion • Not applicable

• Got to see the specialty care doctors enough times to meet your child’s needs?

• Very satisfied • Satisfied • Dissatisfied • Very dissatisfied • No Opinion • Not applicable

11. How often did you have delays or problems in getting referrals to CCS specialty care doctors? • Always • Usually • Sometimes • Never • Not Applicable

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

Got appointments asneededSkills and Experience ofprovidersEnough visit to meet needs

6% 4% 19%

71%

0

20

40

60

80




12. Below is a list of health conditions. What CCS-eligible health condition(s) did your child see a specialist for in the past 12 months? Check all that apply. • Conditions involving the heart (congenital heart disease, rheumatic heart disease) • Cancers and/or tumors • Diseases of the blood (hemophilia, sickle cell anemia) • Diseases of the respiratory system (cystic fibrosis, chronic lung disease) • Endocrine, nutritional, and metabolic diseases (thyroid problems, PKU, or diabetes that is

hard to control) • Diseases of the genito-urinary system (serious kidney problems) • Diseases of the gastrointestinal system (liver problems such as biliary atresia) • Serious birth defects (cleft lip/palate, spina bifida) • Diseases of the sense organs (eye problems leading to loss of vision such as glaucoma and

cataracts, and hearing loss) • Diseases of the nervous system (cerebral palsy, uncontrolled epilepsy/seizures) • Diseases of the muscoloskeletal system and connective tissue (rheumatoid arthritis, muscular

dystrophy) • Severe disorders of the immune system (HIV infection) • Disabling injuries and poisonings requiring intensive care or rehabilitation (severe head,

brain, or spinal cord injuries, and severe burns) • Complications of premature birth requiring an intensive level of care • Diseases of the skin and subcutaneous tissue (severe hemangioma) • Medically handicapping malocclusion (severely crooked teeth) • Other (Please specify)________________________________________________________



Number Percent

N % Tot

White Black API Hisp Other

White Black API Hisp Other

Total surveys 4,065 100

2,045 210 313 1,188 309

100 100 100 100 100

Heart 523 13

127 29 39 297 31

6 14 12 25 10

Cancer/Tumors 181 4

39 7 17 101 17

2 3 5 9 6

Blood 149 4

25 16 25 73 10

1 8 8 6 3

Respiratory 284 7

59 21 26 150 28

3 10 8 13 9

Endocrine/Nutr/Metab 587 14

157 19 41 319 51

8 9 13 27 17

Genitourinary 198 5

48 6 16 110 18

2 3 5 9 6

Gastrointestinal 298 7

82 17 28 150 21

4 8 9 13 7

Birth defects 480 12

134 17 26 265 38

7 8 8 22 12

Sense organs 786 19

173 41 60 449 63

8 20 19 38 20

Nervous system 1,060 26

329 59 85 488 99

16 28 27 41 32

Musculoskeletal/connective 291 7

77 15 15 161 23

4 7 5 14 7

Immune 65 2

14 5 3 34 9

1 2 1 3 3

Injury/poisoning 183 5

53 13 18 79 20

3 6 6 7 6

Premature birth 237 6

61 15 15 114 32

3 7 5 10 10

Skin/subcutaneous 67 2

13 2 4 44 4

1 1 1 4 1

Malocclusion 132 3 27 3 7 85 10 1 1 2 7 3 9

CCS Needs Assessment – Family Satisfaction Survey Results UCSF Family Health Outcomes Project


13. Please tell us what services your child received in the last year:

Did your child receive this

service in the last year?

How satisfied were you with the service?

If you were dissatisfied with any of the services above, please tell us the main reason why. (optional)

If you were very satisfied with any of the services above, please tell us the main reasons way. (optional)

Medical appointments with CCS Specialist Doctors (including doctor’s office appointments or visits to hospital clinics)

Yes No Not Sure

Very Satisfied Satisfied Dissatisfied Very Dissatisfied No Opinion Don’t know/Not

Sure

Needs were not met Had trouble getting an

appointment Had to wait a long time to get

the appointment Was not able to see the

doctor(s) you scheduled you appointment(s) with

Provider was not engaged in the care of your child

Provider you saw was not knowledgeable about your child’s conditions.

Other reason Not applicable

Needs were met Saw very knowledgeable

providers Appointment was made in a

timely fashion Providers were engaged and

caring in my child’s care. Other reason Not applicable

Help from CCS in getting transportation to medical appointments and therapy

Yes No Not Sure


Sure














Inpatient hospital care

Yes No Not Sure


Sure












Medications Yes No Not Sure


Sure






Provider you saw was not knowledgeable about your







child’s conditions. Other reason Not applicable

Medical supplies (e.g. urinary catheters, diapers, syringes, etc.)

Yes No Not Sure


Sure












High Risk Infant Follow Up Program

Yes No Not Sure


Sure







Other reason







Not applicable Medical Therapy Program (MTP) services

Yes No Not Sure


Sure












Home health care (e.g., nursing care and home health aide)

Yes No Not Sure


Sure












Audiology Yes Very Satisfied Needs were not met Needs were met 13



(Hearing aids, cochlear implants)

No Not Sure

Satisfied Dissatisfied Very Dissatisfied No Opinion Don’t know/Not

Sure

Had trouble getting an appointment

Had to wait a long time to get the appointment

Was not able to see the doctor(s) you scheduled you appointment(s) with




Saw very knowledgeable providers

Appointment was made in a timely fashion

Providers were engaged and caring in my child’s care.


Dental or orthodontia services

Yes No Not Sure


Sure














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



CARE COORDINATION A CCS case manager helps getting special doctors and care for your child when medically necessary, and helps get referrals to other agencies, including public health nursing and regional centers. 14. Question 14 was dropped in the final analysis.

15. Does your child have a CCS case manager?


N %

Yes 2,658 65 No 526 13

Do not know 698 17 Missing 183 5

16. How satisfied are you with how your CCS case manager helps your child connect with services?

• Very Satisfied • Somewhat satisfied • Somewhat dissatisfied • Very dissatisfied • Don’t know/not sure

o Why were satisfied or dissatisfied (optional)

17. How often are your child’s services coordinated in a way that makes them easy to use? • Always • Sometimes • Usually

64%

25%

2% 2% 5% 0

10203040506070

Verysatisfied

Satisfied Dissatisfied Verydissatisfied

No Opinion



• Never • Don’t know/Not sure • Not Applicable

INTERPRETATION SERVICES 18. How often do you need an interpreter to help you speak with doctors and nurses?

• Always • Sometimes • Usually • Never • Don’t know/Not sure • Not Applicable, I did not need interpreter services

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

20%

3% 10%

42%

1%

25%

05

1015202530354045

Always Usually Sometimes Never Do Not Know NotApplicable



19. For what language do you need an interpreter?

• Spanish • Tagalog • Vietnamese • Cantonese • Mandarin • Other____________________________

Language N % Spanish 1215 95.1 Tagalog 7 0.6 Vietnamese 30 2.4 Cantonese 17 1.3 Mandarin 8 0.63 Other 1 0.08

20. When you saw CCS specialist doctors in the last year, how often was there an interpreter to help you? (Not Including a family member)

• Always • Sometimes • Usually • Never • Not applicable. I did not need interpretation services. • Not applicable. I did not see CCS specialist doctors in the last year.

MEDICAL EQUIPMENT

21. In the last 24 months, have you had any problems getting special medical equipment or devices (such as a walker, wheelchair, nebulizer, feeding tubes, or oxygen equipment)?

• Yes

63%

13% 18%

6% 0

10

20

30

40

50

60

70




• No • Not applicable

N % Yes 407 16 No 2157 84

Not Applicable 1436

22. If yes, what was the problem? • Took a long time to get equipment • CCS program took a long time to authorize • Durable Medical Equipment (DME) provider wouldn’t provide • Durable Medical Equipment (DME) eligibility

TRANSITION When your child grows up and becomes an adult, they will move from having doctors who take care of children to having doctors who take care of adults. The next questions are about this change.

23. Is your child 14 years or older? • Yes • No

N %

Yes 1343 34 No 2629 66

24. Have doctors or other health care providers talked with your child about how his or her health

care needs will be meet when he or she turns 21?

42%

27%

16% 15%

28%

05

1015202530354045

Took a longtime to get

CCS tooklong time to

authorize

DMEproviderwouldn'tprovide

DMEeligibility

Other




28% of those with a child 14+ report providers talking to them about how their child’s health care

needs will be met when he/she turns 21

25. Has someone within CCS programs helped your child find an adult medical provider? • Yes • No • Don’t know/Not sure

15% of those with a child 14+ report CCS helping to find an adult provider

26. If yes, were you able to find an adult provider? • Yes • No • Don’t know/Not sure

Of those reporting CCS help finding an adult provider, 80% were successful

27. Has someone within the CCS program helped your child with OTHER resources to transition

your child? • Yes • No • Don’t know/Not sure

28. Would more information regarding shifting from child to adult services be helpful?

• Yes • No

o If so, what kind of information would be helpful?

71% of those with a child 14+ would find more information on transition helpful

29. Have you been provided with a plan for the health care of your child from your doctors or nurse’s office or clinic?


N %

Yes 1521 42 No 1462 41 Don't Know 611 17



30. If you have not been provided with a health care plan, would you like to receive one?

• Yes • No • I already have a health care plan

N %

Yes 1034 61 No 2236 39

31. Would you be interested in participating in a Children with Special Health Care Needs parent

support group? • Yes • No • I already belong to a parent support group

N %

Yes 1191 33 No 2236 62 I already belong to a parent support group 173 5

OVERALL SATISFACTION WITH CCS

32. What is your overall satisfaction with CCS services?

• 0 – Very Dissatisfied • 1 • 2 • 3 • 4 • 5 • 6 • 7 • 8 • 9 • 10 – Very satisfied



Number Percent

N

% Tot White Black API Hisp Other White Black API Hisp Other

Total 4,065 100 994 209 313 2,242 307 10 -

Max 2,266 56 475 104 146 1,396 145 48 50 47 62 47

9 557 14 155 22 50 272 58 16 11 16 12 19

8 469 12 133 28 58 207 43 13 13 19 9 14

7 219 5 90 14 16 89 10 9 7 5 4 3

6 77 2 24 5 6 32 10 2 2 2 1 3

5 112 3 35 3 9 60 5 4 1 3 3 2 4 or less 184 5 45 16 16 86 21 5 8 5 4 7 Missing 181 4 37 17 12 100 15 4 8 4 4 5

33. Are there any additional comments about the CCS program that you would like to share?

o 1289 Comments from parents

Themes of comments

Comments

Communication • Very little/poor communication • Difficult getting appointments as needed due to a lack of communication

(e.g., 1-lb premie had to wait 10 months for a pulmonology appointment) • No knowledge of a CCS-sponsored case manager, who they are, how to

connect, what they are for • Little to no knowledge of services covered (or not) by CCS; lack of information

in the community • Unsure of service status • Unsure of how CCS could help their child • CCS staff at the same facility provide different answers to the same question

from the same family about the same child • Unsure of who to contact and how depending upon what the issue is (e.g.,

care provider, case manager, care coordinator, nurse, administrator); may 22



not know who to contact for an issue and if they know who to contact, they don't know how to do so.

• Service lapse when families do not receive renewal notices • Many parents don't know what this program is really about.” • “Local case managers don't really engage with parents other than for

compliances and travel/med/supplies, which they do very well.” • “Not enough phone contact for follow up regarding administration.” • “I am unsure what to expect from CCS what services CCS provides…not sure

how this program actually works.” • “I would like to know more about the program. My child came to me through

foster [care] system and I did not receive info about CCS.” • “Thank you for telling me I have a case manager.” • “I appreciate the mail I get…I appreciate receiving paperwork from you.” • “I would like to have a case coordinator. I would like to learn more about

CCS. What programs do they offer that can help with my daughter's condition?”

• “Everyone is always helpful and understanding. I always feel as though my concerns are heard….”

Suggestions • Better/more/clearer communications regarding available reimbursements

that are not lumped with other types of communications • Faster response time • More information about what the program provides • More warning for renewals to reduce risk and length of gap in coverage

including medications • Notify families when caseworker, in charge of their children's case, is

changed either via mail and/or telephone • When patients are 18+ and parents are the primary care giver, providers

should still ensure that interpreters are available for non-English speaking parents

Eligibility/ Coverage

Issue/Concern • Difficulty getting prescriptions approved and covered by CCS including over-

the-counter products • What medications are covered by CCS? Questions as to what the pharmacy

can charge • Inconsistent coverage of diseases from county to county • Delays in obtaining approval makes DME and prescriptions out of date, the

wrong size, quantity, dosage, etc., particularly a problem for children with rapid progression; should not take 2-3 months for a prescription



• Unsure as to what lab tests are covered or not and why • Discontinuation of therapies because child does not meet goals • Lack of follow up with DME vendors Suggestions • Update therapy guidelines to be more in line with evidence-based therapies

used in other states (e.g., hydrotherapy, equestrian therapy, etc.) • Multiple months of prescriptions at a time (e.g., 90 days) vs. 1 month at a time

- issues of copays and the amount of resources spent filling prescriptions monthly

• Update eligible conditions to include diseases, disorders, conditions that are newly diagnosable

Transportation • “Need to improve transportation reimbursement. Automatic reimbursement would be much easier on patient families.”

• “CCS needs to do better with transportation for the family. I don't have a car and they are trying to send me out of the city, it's incredibly complicated for me.”

• “Traveling out of the county is difficult I would have preferred to stay in town for these appointments.”

• “Travel is grueling, costly, and overnight accommodations are needed more than they are available.”

• “We are blessed to have CCS to help with motel and food vouchers and transportation expenses and medical care.”

• “Mileage reimbursements are extremely helpful, especially as a single mom.” • “CCS always helps me with mileage and lodging when my child has to travel

out of the county…I don't know what I would do without their help.” Transition Issue/Concern

• Dissatisfaction with transition help or lack thereof • Scared as to what will happen when child "ages-out" • Lack of information • Discrimination felt from CCS staff by Spanish-speaking family members Suggestions • Continue to educate families on transition services • Help needed in finding appropriate adult service providers • “It will be sad when [my son] is 21 and [the services] will be gone…they make a

big difference in my son's life.” • “I pray when she gets to be an adult, she gets services equal to CCS.” • “[The CCS worker] made me and my son feel as though she was being racist to

us for the fact that my son has no legal documents here in the US. She answered us very short and stated there are no other services for you once your son is 21. I was very disappointed in her treatment towards us and felt very hopeless in an effort to keep treatment and services for my son after his 21st birthday.” [NOTE: translated from Spanish to English]



Thank you very much for taking the time to fill out this survey. The information from this survey will be used to help improve the CCS program. If you have any questions about this project, you can contact: the Family Health Outcomes Project, 415-476-5283.


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