California Childrens Services Program: Title V Needs Assessment - - PowerPoint PPT Presentation
California Childrens Services Program: Title V Needs Assessment 2018-2019 Jennifer Rienks, PhD, Adrienne Shatara, MPH, Linda Remy, PhD, & Gerry Oliva, MD, MPH, Family Health Outcomes Project at the University of California, San Francisco
Jennifer Rienks, PhD, Adrienne Shatara, MPH, Linda Remy, PhD, & Gerry Oliva, MD, MPH, Family Health Outcomes Project at the University of California, San Francisco
Sacramento, CA
Today’s Objec/ves
process, ac7vi7es and key findings
for program improvements
for ISCD to address in the next five years
workgroups to develop Title V 2021-2025 Ac7on Plan
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Acronyms
Services
CSHCN Six Core Objec/ves
From MCHB-HRSA
making at all levels, and are sa7sfied with the services they receive
comprehensive care within a medical home
services they need
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CSHCN Six Core Objec/ves (cont.)
con;nuously for special health care needs
families can use them easily
services needed to support the transi;on to adulthood
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CCS Needs Assessment and Ac/on Plan Goals
determine Ac#on priori7es to be addressed during FY 2021-2025
effec7ve changes CCS can make to improve services for CCS-eligible children and the systems that support CSHCN
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Title V Assessment and Planning Cycle
Convene Stakeholders Group Assess the Needs
and Identify Program Issues Set Priorities Among Identified Needs/Issues Analyze Problems and Develop Intervention Strategies Develop Five-Year Action Plan Implement Identified Strategies/Interventions Monitor Objectives and Performance Indicators
Convene Stakeholders Group
Stakeholders representa7ve of key interest groups:
Stakeholders provide input in all aspects of the needs assessment and will decide priori7es
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Assess the Needs of CCS Families and Iden/fy Program Issues
and exis7ng data sources
via webinars (4) and mee7ngs and conference calls with Subcommigees (12+)
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Key Informant Interviews
individuals conducted from October to December 2018
Plan, professional organiza7ons, other DHCS department reps.
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Focus Groups
and February 2019
2 groups in Southern CA , 1 group in Northern CA
2 groups in Southern CA, 1 group in Northern CA
Coun7es
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Online Surveys
Worked with survey subcommigee
informants, and focus groups
CSHCN Family Survey - 3,419 responses from CCS families used in PRELIMINARY analyses, number of responses from non-CCS CSHCN to be determined
CCS Provider Survey - 188 responses CCS Administrator Survey - 44 responses represen7ng 39 Coun7es
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Family Survey: Region, Demographics, and Survey Method
Who asked you to complete this survey? % County CCS 74.2 Health Plan 24.5 Local Family Resource Center 0.7 Family Voices 0.1 Children Now 0.0 My child’s doctor 0.5 Missing 15.4 How did you complete this survey? % At CCS as part of annual paperwork 5.3 At my child’s specialist 1.4 By phone (someone called me) 54.8 By computer (Survey Monkey) 11.0 By smartphone (Survey Monkey) 12.7 Interviewed over phone in English 8.0 Interviewed over phone in Spanish 6.3 Interviewed over phone other language 0.6 Missing 12.5 Region % # North Mountain 11.4 391 Bay Area 25.1 857 Sacramento 4.7 162 Central Coast 3.9 133 San Joaquin 4.4 152 Los Angeles 2.2 75 Orange 1.1 37 San Diego 4.5 154 Southeast 42.5 1,452 Missing 0.2 6 White 22.6 Black 5.0 Hispanic 55.4 Asian/PI 7.0 AIAN/Other/Mul7 6.3 Missing 3.7
Family Survey: Demographics and Survey Method
Child’s Age % Newborn-5 30.7 6-10 24.4 11-13 14.2 14-16 14.0 17-21 16.3 Missing 0.5 Income % Lt $20,000 18.6 $20,000-$34,999 25.2 $35,000-$49,999 14.5 $50,000-$74,999 8.1 $75,000-99,999 3.0 $100,000 or over 5.3 Missing 25.4 Highest level of educa7on completed by survey respondent % Middle school 6.4 Some high school 10.1 High school or GED 23.8 Some college 26.1 College bachelor degree 10.0 Graduate level or higher 5.1 Missing 18.5
Provider Survey Respondents (N = 188)
Included Pediatricians and Pediatric Subspecialists; Nurses and Nurse Prac77oners; Physical, Occupa7onal and Speech Therapists; Social Workers, and Others (Die77ans, Case Managers, Therapy Assistants) 50% are currently CCS-Paneled
Prac7ce Sepng % Ter7ary Medical Center (Non- Kaiser) 9.2 Children’s Hospital 21.3 Kaiser Ter7ary Medical Center 10.9 Stand-alone specialty clinic 8.1 Primary care prac7ce (private) 2.9 Primary care prac7ce (public) 2.9 Federally Qualified Health Center (FQHC) 7.5 Other* (please specify) 53.5
* Other setting is most frequently a Medical Therapy Unit (MTU)
% of Prac7ce that are CCS Pa7ents % 0-25% 17.7% 26-50% 14.9% 51-75% 10.3% 76-100% 51.4% Don’t know/Not sure 5.7%
CCS Administrator Survey Respondents
Administrators, Program managers, Public Health Nurses, Directors of Children’s Medical Services, Directors of Nursing
about 25% have been in their current posi7on for 10 years
Criteria for Priori/za/on of Issues/Problems
by Workgroup
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Next Step: Develop Five-Year Ac/on Plan Timeline: October 2019 - February 2020
develop goals and SMART (Specific, Measurable, Achievable, Realis7c, and Time-bound) objec7ves
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Criteria Development Process
defining criteria at ini7al stakeholder mee7ng
manageable number of criteria, and further developed and refined selected criteria
that will be used to priori7ze problems/issues to be addressed in next five years
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Priori/za/on Criterion 1
What is the impact on children’s (CYSHCN) health of addressing the issue/problem?
Defini;on/Concept: The impacts of addressing the issue can range from no impact on family or the system, to moderate (e.g. reduc7on in delays in care), to large (e.g. preven7ng death or permanent disability, prolonging life or improving quality of life). Health impacts include physical and mental health as well as the overall quality of life for the child, their family, and their community. Ra;ng Scale:
term, nega7ve consequences
care) but only short-term, posi7ve impact
impacts (e.g. prevents death or permanent disability)
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Priori/za/on Criterion 2
Does addressing the issue reduce dispari;es in health care access and/or health outcomes?
Defini;on/Concept: One or more popula7on subgroups of CYSHCN as defined by race/ethnicity, income, insurance status, gender, geography, or diagnosis have worse access and/or poorer health outcomes than the general group, and that addressing the problem would reduce disparity. Ra;ng Scale:
access/outcomes
access/outcomes
access/outcomes
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Priori/za/on Criterion 3
Do we have, or can we access, the financial resources to do what is needed to succeed?
Defini;on/Concept: Financial resources = funds from Federal, State, and Local government; founda7on grants; partner contribu7ons/investment; etc. Ra;ng Scale:
capacity but need to find the financial resources; we have the financial resources but need to build capacity
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Priori/za/on Criterion 4
Do we have the capacity and will to do what is needed to succeed?
Defini;on/Concept: Capacity/will includes having all of the following factors: the resources (including infrastructure, personnel, and/or training capacity), poli7cal will, parental/ family will, community will, poten7al to build on exis7ng efforts, and the poten7al for partnerships. Ra;ng Scale:
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Priori/za/on Criterion 5
Are there evidence-based or best prac;ce strategies to address the issue?
Defini;on/Concept: Evidence-based means support in research/evalua7on literature. Best prac7ces have not been formally validated but are recommended by experts or by informal evalua7ons of local, state or na7onal programs. Ra;ng Scale
are not yet evidence-based
be implemented
impact
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Priori/za/on Criterion 6
Will addressing the issue ease the burden on families?
Defini;on/Concept: Burdens that families can face include: social, economic, emo7onal, psychological, physical, geographic/transporta7on, etc. Some examples
include: in-home support, respite care, support groups, 7mely receipt of services and supplies. Ra;ng Scale:
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Sample Priori/za/on Tool
INSTRUCTIONS: Below is a brief lis;ng of each of the criterion that you will be using to rate each of the poten;al priori;es, and the weights for each criterion in the blue box. Please refer to and use the accompanying PRIORITIZATION CRITERIA sheet for details on the criterion and scoring defini;ons, and, for each priority, put in a score for each of the criterion (0-4) in the boxes below. A formula is used to that takes each of your criterion scores, mul;ply it by its weight, and then add them all together for a total score for each priority. Criterion #1: What is the impact on children’s (CYSHCN) health of addressing the issue/problem? Criterion #4: Do we have the capacity and will to do what is needed to succeed? Criterion #2: Does addressing the issue reduce dispari;es in health care access and/or health outcomes? Criterion #5: Are there evidence-based or best prac;ce strategies to address the issue? Criterion #3: Do we have, or can we access the financial resources to do what is needed to succeed? Criterion #6: Will addressing the issue ease the burden on families?
Poten;al Priority
C1 C2 C3 C4 C5 C6 Total Score TBD TBD TBD TBD TBD TBD
Vo/ng on Criterion Weights
to evaluate how well each iden7fied problem meets each criterion
determine which are the most important
than others in genera7ng a score with which to determine which problems CCS should address. We use a scale of 0 to 4, with 4 being the most important
To Vote on Criteria Weights Online:
Goal 1: Families Are Partners
with special health care needs partner in decision- making at all levels, and are sa7sfied with the services they receive.
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Families Are Partners: What We Heard
thankful that the DHCS/ISCD had FHOP conduct focus groups as part of the needs assessment
learn what to expect, and provide support
the local Family Resource Center will be sent a referral to follow up with the family (this does happen when a child receives Regional Center services)
confusion for those with CCS and private insurance
really well. The OTs and PTs are great and very knowledgeable about the MDs at [local children’s hospital]. No complaints about them. Only thing that is hard for me is that they don’t have azer hours for therapy (OT), he has been missing school and gepng depressed because he isn’t doing well in school.”
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Families Are Partners: What We Heard
In Family Focus Groups:
CMs
most as some7mes also coordina7ng care; when asked who coordinates care for their child, one parent said:
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“We do! Parents coordinate care for their children. But beyond that, MTUs seem to have yearly care plans. Physicians have care plans for specific diagnoses, but not specific to the child. CCS never provides us with a care plan.”
Families as Partners: Family Survey
Do you and your doctor/provider work together as partners to make health care decisions? % Always 65.9 Usually 20.9 Some7mes 9.2 Never 4.0 Do you and your doctor/provider talk about the range of treatment and care choices for your child/youth? % Always 66.8 Usually 20.3 Some7mes 9.5 Never 3.4 How ozen did your child’s doctor and/or
enough 7me with you and your child? % Always 64.6 Usually 25.7 Some7mes 8.2 Never 1.5 Does your provider honor your requests for others (extended family, community elders, faith leaders or tradi7onal healers that are designated by the family) to par7cipate in the process that leads to decisions about care? % Always 59.7 Usually 20.1 Some7mes 7.8 Never 12.4 Have your child’s doctors or other health care providers worked with you and this child to create a wrigen plan to meet the child’s health goals and needs? % Yes 66.6 No 21.3 Do not know 12.1
Families Are Partners: Provider Survey
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29.3% 31.6% 21.3% 4.0% 2.9% 10.9%
0% 5% 10% 15% 20% 25% 30% 35%
Families would benefit from County CCS programs being required to convene family advisory commigees
Strongly Agree Somewhat Agree Neutral Somewhat Disagree Strongly Disagree Don’t Know/Not Sure
Case Management: Family Survey
Has your child/family been assigned a case manager? % Yes 46.8 No 20.6 Do not know 22.9 Missing 9.7 If case manager assigned, how sa7sfied have you been in the past 12 months with how your case manager helps your child connect with services? % Always 71.4 Usually 21.7 Some7mes 5.9 Never 1.0 If case manager assigned, what agency? Check all that apply. % County CCS 73.7 Health Plan 6.2 Regional Center 19.6 CCS Special Care Center 18.9 Other 6.9 Missing 1.9
Sa/sfac/on with CCS and Health Plan: Family Survey
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Overall, how sa7sfied are you with the CCS program on a scale of 0 (not at all) to 10 (very)? % 0 to 5 4.8 6 to 8 24.6 9 10.8 10 59.8
What is your overall sa7sfac7on with the services that your Health Plan provides for your child? % 0 to 5 6.5 6 to 8 24.7 9 12.6 10 56.2
Goa Goal 2 2: M Med edical Home Home
Medical Home - a medical home can be a physician's office, a hospital outpa7ent clinic, a community health center or school-based clinic, as long as it provides the services that cons7tute comprehensive care – con7nuous access to medical care; referral to pediatric medical subspecial7es and surgical specialists; and interac7on with child care, early childhood educa7on programs and schools to ensure that the special needs of the child and family are addressed (American Academy of Pediatrics) hgps://mchb.hrsa.gov/research/strategic_defini7ons.asp
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Medical Home: What We Heard
successful
Access Issues
appointments with specialists
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Medical Home: What We Heard
Durable Medical Equipment
less than reimbursement
discharged or delays in discharge
vendors as a result Communica;on between Providers
Workforce/Capacity Issues
paper work, challenges dealing with Medi-Cal Managed care plans
enforce standards, panel physicians
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Medical Home: What We Heard
afraid of our pa7ents—if our pa7ents are immunosuppressed that scares clinic pediatricians in the area. We don’t have a list of the ones that will take them and do well, and we don’t know which ones will work with our pa7ents, and we also don’t know what insurance the good ones take. Pa7ents in the farther flung communi7es have a harder 7me…” – Provider Survey
hospitals that we have—have fed pediatricians into the community that have stayed. We are pregy lucky in that the pediatricians in our community are pregy good at providing care coordina7on, because
MDs can’t take too many kids with Medi-Cal so FQHCs cover the gaps because they are not scared of the low reimbursement rate.” – Administrator Survey
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Medical Home: Na/onal Survey of Children’s Health (NSCH)
43.2% 42.2% 56.8% 57.8%
0% 10% 20% 30% 40% 50% 60% 70%
US California
% of CSHCN, ages 0 through 17, who have a medical home that meets the medical home criteria (2016 +2017)
Care MEETS medical home criteria Care does NOT meet medical home criteria
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Medical Home: Provider Survey*
What would your prac/ce need to become me a me medical home me for CCS clients? % Addi7onal resources (e.g. financial reimbursements, more staff) 46.9 Nothing, I have everything I need to be a medical home for CCS clients 9.9 Nothing, there are other reasons for my not providing a medical home for CCS clients 6.2 Don't know/Not sure 29.6
Consider their practice to be a medical home for CYSHCN based on AAP definition of medical home
Do not
Don't know/not sure Are you currently part of a Health Plan that is suppor7ng your prac7ce to become a medical home?
*Note: For medical home questions, survey results include only physicians and nurses
Ra7ng of importance of the following resources that could enable your prac7ce to be a primary medical home for CCS clients
5 - Very Important
Electronic medical record system that links primary care with pediatric subspecialty providers
57.8%
Ability to make informal consults and contacts with subspecialty providers (email, phone consulta7on, and/or telemedicine)
56.3%
Reimbursement for longer office visits
61.9%
Support staff for case management/care coordina7on
70.3%
Adequate reimbursement for care coordina7on and case management services
64.1%
Readily available treatment guidelines for pa7ents with specific diagnoses/condi7ons (e.g., neurofibromatosis, seizure disorders)
40.6%
Readily available community level resources (e.g., Regional Center, Family Voices) for my pa7ents and their families to meet their social, psychosocial, and home health needs
50.8%
Availability of subspecialty pediatric providers in my network
66.7%
Direct mechanism for communica7on and interac7ng with the child’s school
31.3%
Medical Home: Provider Survey
Accessing Health Care: Family Survey
Is there a place that this child USUALLY goes when they are sick and you or another caregiver needs advice about his or her health? % Yes 66.9 No 18.8 Do not know 5.5 Missing 8.9 During the past 12 months, how many 7mes did your child see a doctor, nurse, or other health care professional for sick-child care, well-child check-ups, physical exams, hospitaliza7ons or other kind(s) of medical care? % 2.9 1 9.1 2 - 3 32.6 5 - 7 17.2 8+ 28.5 Missing 9.7 During the past 12 months, how many 7mes did your child visit a hospital emergency room? % 49.2 1 19.1 2 9.7 3 5.3 4+ 7.0 Missing 9.8
Diagnoses Total Mild Mod Sev Agen7on deficit disorder or agen7on deficit hyperac7ve disorder (ADD or ADHD) 10.2 35.0 43.4 21.7 Allergies 25.2 46.8 36.9 16.3 Anxiety problems 15.0 39.3 43.2 17.4 Arthri7s or joint problems 11.1 27.5 45.3 27.1 Asthma 15.0 51.2 34.3 14.5 Au7sm, Asperger’s disorder, pervasive developmental disorder (PDD), or au7sm spectrum disorder (ASD) 8.3 35.3 32.1 32.6 Behavioral or conduct problems 13.1 33.0 45.4 21.6 Blindness or impaired vision 23.1 41.7 34.7 23.6 Blood problems other than hemophilia
4.2 39.4 25.5 35.1 Broken bones 6.9 46.1 27.9 26.0 Cancer, tumors 5.3 27.4 30.8 41.9 Cerebral palsy 18.8 31.3 38.7 30.0
Has a doctor or other health care provider ever told you that your child had or has any of the condi7ons in the list below? If yes, does the child currently have the condi7on, and is/was that condi7on mild, moderate, or severe? (check all that apply)
Number of Condi7ons % Any 1 31.7 2 17.3 3 11.9 4 9.5 5 7.6 6-7 10.5 8+ 11.7
Diagnoses Total Mild Mod Sev Clez lip/clez palate 3.6 38.8 38.8 22.5 Congenital heart disease 9.8 39.6 30.4 30.0 Cys7c fibrosis 1.1 44.0 28.0 28.0 Diabetes 8.2 21.5 48.6 29.8 Depression 7.3 49.1 37.3 13.7 Dental problems 15.3 42.2 40.7 17.1 Developmental delay 29.5 31.9 32.1 36.0 Down syndrome 2.6 34.5 29.3 36.2 Epilepsy or seizure disorder 13.9 33.4 36.4 30.2 Gene7c disorder 11.8 19.1 30.5 50.4 Head injury, concussion, or trauma7c brain injury 7.5 27.1 31.9 41.0 Hearing loss 16.4 25.1 42.4 32.5 Heart problems 13.2 43.2 31.2 25.7 Hemophilia 0.8 55.6 16.7 27.8 HIV or AIDS 0.4 75.0 12.5 12.5 Infec7ous disease 1.7 47.4 28.9 23.7
Has a doctor or other health care provider ever told you that your child had or has any of the condi7ons in the list below? If yes, does the child currently have the condi7on, and is/was that condi7on mild, moderate, or severe? (check all that apply)
Diagnoses Total Mild Mod Sev Intellectual disability 17.4 28.2 31.8 40.1 Intes7nal or gastrointes7nal problem 17.3 27.3 44.5 28.1 Kidney disease or other kidney problems 7.4 29.7 41.8 28.5 Liver problems 2.3 40.0 36.0 24.0 Lung disease 5.7 29.1 37.8 33.1 Mental health problem (Other than depression) 5.0 31.3 39.3 29.5 Migraine or frequent headaches 9.1 43.1 40.1 16.8 Muscular dystrophy 3.0 20.9 31.3 47.8 Sickle cell anemia (trait or disease) 0.9 40.0 25.0 35.0 Spinal bifida 2.8 24.6 34.4 41.0 Spinal cord injury 1.6 41.7 22.2 36.1
Has a doctor or other health care provider ever told you that your child had or has any of the condi7ons in the list below? If yes, does the child currently have the condi7on, and is/was that condi7on mild, moderate, or severe? (check all that apply)
Access to Specialty Care: Family Survey
Specialists are doctors like surgeons, heart doctors, allergy doctors, skin doctors, and other doctors who focus on
different specialist doctors has your child seen in the last 12 months? % 10.9 1 35.9 2 26.5 3 15.5 4+ 11.2 How many 7mes did your child see a specialist(s) in the last year? % 7.6 1 18.9 2 20.2 3 12.3 4 10.6 5+ 30.4 In the last 12 months, how ozen was your child able to see a specialist when needed? % Always 74.2 Usually 19.2 Some7mes 5.5 Never 1.1 In the last 12 months, how ozen was your child able to see a specialist in a quick and 7mely manner? % Always 59.8 Usually 26.2 Some7mes 11.2 Never 2.8
Access to Specialty Care: Family Survey
were you NOT able to see in a quick and 7mely manner table
not being able to see at least one type of specialist in a quick and 7mely manner
Specialist % Allergy/Immunology 4.6 Cardiology 9.3 Dermatology 5.5 Developmental Medicine 5.0 Endocrinology 9.5 Gastroenterology 14.8 General Surgery 3.0 Gene7cs 7.5 Gynecology 1.1 Hematology 2.4 Nephrology 3.5 Neurology 23.0 Neurosurgery 10.5 Newborn Medicine 1.2 Nutri7on 4.0 Ophthalmology 16.3 Otolaryngology 10.5 Plas7c Surgery 2.4 Psychiatry 5.0 Pulmonology 8.4 Rheumatology 1.4 Sports Med/Orthopedics 10.4 Urology 4.7
Access Issues: Data from the California Specialty Care Collabora/ve (CSCC)
Average pa7ent wait 7me for the following special7es that exceeded 15 business days for the 3rd next available ini7al appointment Specialty Days Orthopedics 16 Hematology/Oncology 16 Infec7ous Disease 16 Gastroenterology 20 Urology 22 Endocrinology 23 Plas7c Surgery 23 Otolaryngology 25 Rehabilita7on Medicine 26 Psychiatry 31 Pulmonary 31 Pallia7ve Care 30 Rheumatology 32 Pain Services 33 Nephrology 44 Neurology 41 Ophthalmology 45 Metabolic 54 Medical Gene7cs 73 Subspecialty Months General Surgery 14 Medical Gene7cs 14 Allergy 14 Behavioral/Developmental 14 Otolaryngology 15 Rehabilita7on 15 Pallia7ve Care 16 Pulmonary Medicine 18 Neurology 18 Orthopedic Surgery 21 Metabolic 23 Ophthamology 22 Cardiothoracic Surgery 24 Dermatology 24
Average length of time CSCC members have been recruiting for certain subspecialties that exceed one year
Service Needs and Care Received
During the past 12 months was there any 7me when your child needed the following services: % Received care (%) Total All Some None Communica7on aids or devices 5.1 80.6 8.6 10.8 Dental checkup/teeth cleaning 19.3 88.0 7.6 4.4 Durable medical equipment 13.3 85.9 7.7 6.4 Eyeglasses or vision care 13.8 87.0 8.5 4.5 Hearing aids or hearing care 4.8 83.3 9.8 6.8 Home health care 5.4 82.4 8.1 9.5 Hospitaliza7on (in-pa7ent stay) 10.5 90.6 6.6 2.8 Mental/behavioral health care 6.2 84.1 7.6 8.2 Medica7ons 19.3 89.0 7.2 3.8 Other dental care 3.7 77.5 9.8 12.7 Pain management 14.2 86.1 9.5 4.4 Physical/occupa7onal therapy 11.3 33.4 36.4 30.2 Specialty care 12.6 87.8 9.0 3.2 Speech therapy 10.1 85.8 9.8 4.4 Substance abuse treatment/ counsel 0.1 50.0 0.0 50.0 Well-child check-up 18.3 90.6 7.0 2.4 X-rays 12.6 91.0 6.4 2.6
Any Services Needed % 1 16.7 2 15.8 3 14.7 4 14.1 5-6 19.4 7+ 19.4
Access to Care: Challenges in Rural Coun/es
specialty medical services. Because of this, our agendance to appointments is difficult and it can be hard to maintain services without regular appointments. Our families know the importance of agending regular appointments, but simply cannot make them due to distance, weather, inability to take 7me off work, and having mul7ple other children with some also having special medical needs” – CCS Administrators’ Survey
all recognized geography as a barrier in gecng access to care. During a focus group ques7on about DME, one provider stated:
“…we do pick up a lot of kids that have chronic infec7ons in remote coun7es, we don’t send [those] kids home some7mes because they won’t be able to get what they need out there—we can’t find anyone out there that can do the dressing changes or get home care.”
Access to Care: Administra/ve Issues
From CCS Administrators Survey:
regard to 7meliness of authoriza7ons and opening cases
renewals, and eligibility for new referrals. We are not receiving returned emails.”
have had three recently that expired without contact from the state though we submiged documents three months ahead of 7me.”
Access to Care: Workforce Issues
meet the current and future health needs of children in California” – California Specialty Care Coali7on
presents challenges in terms of the availability and capacity of primary and specialty care providers - Provider Survey
stated that there are challenges in their program’s capacity to perform, including:
therapists, nurse case managers, public health nurses, clerical staff)
coun7es
will be adequate to cover minimum staffing standards
Access to Care: Workforce Issues (cont.)
“There is unan7cipated/unfunded workload remaining at the coun7es that was not planned as part of WCM, such as AMRs [annual medical reviews] taking much longer than the State- allocated 12 minutes, since the Health Plans are not able to provide medical records needed for AMR. Coun7es are also chasing the Medi-Cal churn as clients fall on and off of Medi-Cal. Inter-county Transfers are significantly more complex, with difficulty obtaining records from the Health Plan. Complexi7es of straddling communica7on with the Health Plans, use of SFTP for constant PHI data transfer, weekly, monthly, quarterly mee7ngs with the Health Plans to troubleshoot and problem solve implementa7on and transi7on issues.” Impacts of access issues
(81%) and primary care (73.3%) for children with CCS condi7ons will help decrease ER visits and hospitaliza7on
Barriers to providing high quality care to CCS clients (0 = Not a barrier, 5 = significant barrier): Provider Survey
State capacity to conduct facility assessments Lack of electronic records Other, rate here and describe below State capacity to enforce CCS regula7ons Delay in payments for services provided to CCS State capacity to promptly process applica7ons for CCS reimbursement rates for care of CCS-covered Primary care physician’s ability to access electronic Delay in authoriza7ons from CCS Health Plan requirements to use outside labs/ Amount and difficulty of paperwork to complete Medi-Cal reimbursement rates for care of Delay in authoriza7ons from Private Health Plans Amount and difficulty of paperwork to complete Delay in authoriza7ons from Medi-Cal Managed Communica7on challenges with sharing Complexity of care and amount of 7me needed to Working with Medi-Cal Managed Care Health Amount of resources needed to coordinate Transporta7on issues, e.g., families gepng to Amount of accessible and available resources (e.g.
0.5 1 1.5 2 2.5 3 3.5 4 4.5
Communica/on between Providers: What We Heard
in clinic—not in clinic communica7on is spogy. We’ve had issues where pulmonology is concerned about scoliosis but not talking to the
signing off on it. There are other examples where we don’t know how to intervene. Communica7on needs to be improved” – Provider Focus Group Family Focus Groups:
communicate with each other and this leaves parents as the go- between.
gepng private therapy services) since services may be taken away
Communica/on with Others Serving CCS Popula/on: Provider Survey
35.5% 53.7% 22.7% 23.1% 50.9% 10.1% 10.5% 40.8% 39.4% 44.8% 52.1% 21.0% 32.5% 31.6% 17.8% 4.6% 20.4% 16.0% 13.8% 30.8% 34.5%
1.8% 1.1% 8.7% 6.5% 7.2% 22.5% 16.4% 4.1% 1.1% 3.5% 2.4% 7.2% 4.1% 7.0% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Primary Care Providers Other Specialty Care Providers, including Special Care Centers Regional Centers Schools CCS Medical Therapy Program (MTP) Mental Health Providers Community-Based Organiza7ons
Regularly Communicate Some7mes Communicate Based on Needs Rarely Communicate Never Communicate Don’t Know/Not Sure
Barriers to Provider Communica/on: Provider Survey
27.6% 21.8% 13.9% 30.9% 24.1% 18.5% 31.6% 41.2% 49.1% 5.9% 6.5% 13.9% 4.0% 6.5% 4.6%
0% 10% 20% 30% 40% 50% 60% Time Constraints Lack of Shared Electronic Medical Records (EMR) Health Insurance Portability and Accountability Act (HIPAA) Concerns [Consent Forms] Don't Know/Not Sure Never Some7mes Usually Always
Access to Mental and Behavioral Health Care: Provider Survey
8.4% 10.0% 8.6% 18.2% 15.0% 13.0% 18.9% 16.4% 18.0%
45.5% 29.3% 33.1%
0% 10% 20% 30% 40% 50%
CCS children have adequate access to mental and behavioral health care. Non-CCS CYSHCN with private insurance have adequate access to mental and behavioral health care. CYSHCN with Medi-Cal Managed Care Health Plans have adequate access to mental and behavioral health care.
Strongly Disagree Somewhat Disagree Somewhat Agree Strongly Agree 51.1 % 45.7% 64%
Mental Health and Social Determinants of Health (SDOH) Screening: Provider Survey
11.6% 15.9% 11.6% 15.9% 33.3% 39.1% 23.2% 29.0% 23.2% 23.2% 31.9% 29.0%
13.0% 5.8% 13.0% 8.7% 18.8% 15.9% 20.3% 17.4%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Use a screening tool to iden7fy needs related to the SDOH for your CCS pa7ents? Use a screening tool to iden7fy needs related to mental and behavioral health for your CCS pa7ents? Use a screening tool to iden7fy needs related to SDOH for your non-CCS CYSHCN pa7ents? Use a screening tool to iden7fy needs related to mental and behavioral health for your non-CCS CYSHCN pa7ents? Always Usually Some7mes Never Don't Know/Not Sure
*Note: Survey results only include nurses and physicians
Reasons for Not Screening for Mental Health
UCSF FAMILY HEALTH OUTCOMES PROJECT
64
28.8% 11.9% 30.5% 32.2% 10.2% 15.3% 18.6% 20.3% 0% 5% 10% 15% 20% 25% 30% 35% Not applicable - CYSHCN are rou7nely screened for mental and behavioral health Not aware of referral sources to be able to address these needs Not enough 7me to do screening Not enough staff to do screening No reimbursement Not familiar with screening tools Screening tool not built into EMR Not my role/job
*Note: Survey results only include nurses and physicians
Access to DME and Medical Supplies: What We Heard
things unless we pair them all together. For example, a helmet is hard to get from a vendor unless the child is gepng a wheelchair, and a walker, then they’ll throw the helmet in—they don’t want to do all that paperwork for just a helmet.” – Provider focus group
fact that the Medi-Cal reimbursement for the item is less than the vendors cost. Also a problem is the fact that large companies are buying out the smaller DME companies. These larger companies have increased the turnaround for obtaining DME drama7cally. This is a great frustra7on for staff and CCS MTU families.” - Provider focus group
changing for CCS, and they don’t inform you. I went to college, but even for me it is confusing. The biggest issue that I had is that a lot of the treatments are not consistent—there was a period of 7me when my daughter did not get any therapy (5 years old, cerebral palsy) and I was given all of the excuses in the book. One thing is that they only allow you to get one necessary medical equipment and then are only granted one when the child is ac7vely able to use it, for example a gait
that CCS would not grant us (a light gate trainer). In therapy—they give her all kinds of equipment to use and then they tell the parents to duplicate it at home, but CCS won’t give them more than one piece of equipment—how are parents supposed to duplicate therapy at home so that she doesn’t lose what she has
insurance are surpassing my daughter and we lost a year because of CCS. A lot of the “prescrip7ons” they grant have to be signed off by an MD and there are always delays due to this. Long wait between prescrip7on and administra7on, MDs some7mes don’t return authoriza7ons don’t carry over, have to go back to the new MD for a new authoriza7on.”
Access to DME and Medical Supplies: What We Heard
ACCESS to DME- How ogen issues related to DME present problems for your pa/ents: Provider Survey
0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50%
Too few DME providers willing to work with Medi-Cal due to low reimbursement rates Too few DME providers willing to work with Medi-Cal due to delays in payment DME providers refusing to provide certain kinds of equipment due to low reimbursement rates for that Client discharges being delayed due to issues in
Hospitals or families having to purchase DME so that clients can be discharged in a 7mely manner Clients missing school/parents missing work due to delays in gepng or repairing needed DME DME providers refusing to repair or maintain equipment that they were not authorized to provide Don't Know/Not Sure Never a Problem Rarely a Problem Occasionally a Problem Frequently a Problem
70% 63.9% 45.8% 59.9% 71.8%
Medical Home
Administra7ve Processing Times
UCSF FAMILY HEALTH OUTCOMES PROJECT
68
Source: CMSNet 2014 & 2018
2 Days or Less 3 days to 1 wk Within 1 week Within 2 weeks Referral un7l first SAR auth. 2014 8.6% (4071) 30% (13999) 39% 65% 2018 5.9% (15406) 11.7% (30492) 17.6% 28.8% SAR request to first auth. 2014 40.2% (185816) 25%(117038) 65% 79% 2018 16.9% (18889) 17.6%(19590) 34.5% 51.5% HHA SAR to Auth. 2014 40.6% (1205) 33% (983) 74% 86% 2018 25.1% (1198) 29.3% (1397) 54.4% 68.5% Wheelchair SAR to auth. 2014 37.6% (1074) 21% (604) 58% 73% 2018 25.9% (970) 18.9% (604) 44.8% 58.7%
MCHB Outcome #3: Insurance Coverage
Families of CSHCN have adequate private and/or public insurance to pay for the services they need.
69
Adequacy of Insurance: NSCH 2016/17
26.6% 36.0% 73.4% 64.0% 0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0% 80.0% CA US
Insurance IS adequate for child's health needs (CSHCN) Insurance is NOT adequate for child's health needs
Insurance Coverage: Administrator Survey
eligible clients rather than dropping the Medi-Cal if pended so that folks do not experience a lapse in care”
CCS]. This leads to poor case management and fragmented services”
eligibility to 6 months, not monthly”
children for 30-60 days when they fall off of [Medi-Cal Managed Care Plan] but s7ll have fee for service Medi-Cal.”
needs while wai7ng for CCS eligibility”
UCSF FAMILY HEALTH OUTCOMES PROJECT
71
Insurance Coverage: Family Survey
Child covered by any of the following types of insurance (check all that apply) % Medi-Cal 90.9 Private 13.5 Do not know 0.2 Uninsured 0.1 Does your child’s health insurance allow your child to see the health care providers that your child needs? % Always 74.5 Usually 18.6 Some7mes 4.2 Never 0.6 Not applicable 1.2 Missing 0.7
Insurance Coverage: Family Survey
months, did your child need any services that their insurance did not cover? Please check all that apply:
Service % Communica7on aids or devices 7.2 Dental checkup/teeth cleaning 14.3 Durable medical equipment 20.0 Eyeglasses or vision care 17.9 Hearing aids or hearing care 5.4 Home health care 3.6 Hospitaliza7on (in-pa7ent stay) 4.1 Mental/behavioral health care 5.1 Medica7ons 26.8 Other dental care 12.3 Pain management 2.0 Physical/occupa7onal therapy 11.7 Specialty care 8.7 Speech therapy 10.8 Substance abuse treatment/counsel 0.2 Well-child check-up 4.6 X-rays 2.6
MCHB Outcome #4: : Screening and Prevalence
Children are screened early and con7nuously for special health care needs
UCSF FAMILY HEALTH OUTCOMES PROJECT
74
High-Risk Infant Follow-Up Program (HRIF)
California’s High Risk Infant Follow-up (HRIF) Program, run by CCS, oversees
discharge from the NICU through local HRIF clinics. HRIF clinics provide follow-up care to all infants born before 32 weeks of gesta7on,
behavioral, neurological, developmental, or growth challenges later in childhood.
meet developmental milestones.
providers who follow the infant over the first three years of life and iden7fy exis7ng and new issues as they arise. HRIF is related the MCHB Goal of Early & Con;nuous Screening because it is meant to provide early screening and detec7on of a special health care need to a high risk popula7on.
HRIF: Data on Loss to Follow-Up
California, 56 (82%) responded to the survey
programs with higher no-show rates for subsequent visits.
mailings.
distant to the high-risk infant follow-up clinic.
Follow-Up (LTFU), which can be detrimental to families and children, especially very low birth weight (VLBW) infants. They have determined that:
least 1 HIRF visit w/in 12 months
moved (5%), insurance authoriza7on denied (3%), unable to contact (14%),
HRIF: Data on Loss to Follow-Up (cont.)
Hintz et al. (2019) also found:
agendance was associated with:
agendance was associated with:
HRIF: Needs and Ongoing Efforts
Needs based on research findings:
during infant hospitaliza7on in the NICU
HRIF program is working to:
and what the process challenges are
need to be tailored to HRIF programs and regional needs
Screening of Medi-Cal Children
Developmental Screening
enrolled in Medi-cal over the past five years have not received all of the preven7ve health services that the State has commiged to them.” - Source: California State Audit Report 2019
children each year enrolled in Medi-Cal did not receive all required preven7ve services, according to the findings - Source: California State Audit Report 2019
Developmental Screening: NSCH
31.10% 22.20%
68.90% 77.80%
46.90% 29.70%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90%
US California
% of children, ages 9 through 35months, who received a developmental screening using a parent-completed screening tool in the past year (16;17) Goal: Con7nuous Screening Parent Completed Parent did NOT complete Parent of CSHCN completed Parent of CSHCN NOT completed
Well-Child Visits
Provider Survey: Over 95% of providers feel that the annual well-child visit for CYSCHN is very important (N = 66) Are CYSHCN receiving well-child visits? (N = 70)
visits 50.0%
having these visits 24.2%
having these visits 9.1%
these visits 16.7%
Who is providing these visits: (open- ended)
Providers
During the past 12 months, how many 7mes did your child receive a well-child check-up, which is a general check-up, when they were NOT sick or injured? % 8.8 1 16.8 2 15.8 3+ 15.0 Missing 10.2
*Note – reporting data only for physicians and nurses
Family Survey:
MCHB Outcomes #5: Organiza/on of Services
Community-based services for children and youth with special health care needs are
UCSF FAMILY HEALTH OUTCOMES PROJECT
82
MCHB Outcomes #5: Organiza/on of Services
15.7% 17.9% 84.3% 82.1% 0% 20% 40% 60% 80% 100% Na7onwide California
Percent of children with special health care needs (CSHCN), ages 0 through 17, who receive care in a well- func7oning system (2016/17)
Receive care in a well-func7oning system Do not receive care in a well-func7oning system CA ranked 36th compared to
Organiza/on of Services: What We Heard
parents that struggle either with finances, language, or comprehension of the
following medica7on instruc7ons are challenging for them. Many do not have transporta7on to come to clinic. We're lucky that our ins7tu7on provides case managers that helps us with paperwork related to coverage, but they can't help the post discharge execu7on by the families. Having someone from the health plan that knows the care plan and help the family adhere to it would be extremely helpful. The possibility of transport assistance is also extremely helpful.” – CCS Provider Survey
county as the formularies are different. We need to know which diabetes supplies are covered and which brands are covered. We need this informa7on easily accessible to providers and pharmacists so the correct medica7on can be provided. Families have delays in gepng prescrip7ons or glucose test strips and our staff spends significant amounts of 7me sor7ng this out. Coun7es change what they will cover and and it seems providers are the last to know. We would appreciate a list from each county sent to providers or up on the CCS website lis7ng what is covered and changes to coverage.” – CCS Provider Survey
Organiza/on of Services: What We Heard
have cared for him since birth) has been receiving CCS benefits since he was an infant. I honestly can say I don't know what I would have done back then without them. He has a twin with the same muscle disease and is also a CCS
diseases due to the complexity of symptoms. It is gene7c with each genera7on presen7ng more severe un7l finally a baby with the most severe form is diagnosed. We are so grateful to have our CCS manager who understands my grandsons' needs and helps us keep our team of doctors that care for them. And now with the new dx of leukemia, it is even more important than ever that we keep receiving our authoriza7ons in a 7mely
understands complex diseases and knows the importance of keeping on top
ever, and when you have a seriously ill child, that means a lot. We are also grateful to the Lucile Packard Children’s Hospital and Medical doctors that accept Medi-Cal/CCS.” – CCS Family Survey
Organiza/on of Services: What we heard
my wife what we needed to do. For example, who to call, and what stuff we needed so that CCS can authorize
what is going on so we know what to expect.” – CCS Family Survey
what rights are in CCS , understanding of how program
trauma7c 7me when I signed the paperwork and I must've signed it not realizing. I'm sure someone told me because I was caught up in life.” – CCS Family Survey
Organiza/on of Services - WCM: What We Heard
radiology, and there is a lot of fragmenta7on because the family needs to call these different companies in order to access the
phone calls—whereas in the past we could make sure that they get what they need. Not all families are equipped to do this.” – CCS Administrator Focus group
Medi-Cal Managed Care it is actually fragmented and they want a separate authoriza7on—providers feel like they have to ask for
encompass that diagnosis—so it is a broader authoriza7on off of a specific diagnosis. Now, with Whole Child Model they are adding addi7onal steps and complica7ons.” - CCS Administrator Focus group
ask case management ques7ons, we are told ‘well, that’s not your business.’ Clients don’t know who to call at the Health Plan—they have to tell their story to four different people in four different departments.” - CCS Administrator Focus group
UCSF FAMILY HEALTH OUTCOMES PROJECT
87
Organiza/on of Services - WCM: What We Heard
come all of the 7me and on 7me and then we started to no7ce that they weren’t showing up. When June came, I called to find
the vendor. When I called the vendor they said that due to the changes they were not contracted with [health plan], and then I called CCS and they said that the vendor should be contracted and expected me to call and figure out who they are contracted
and they all said was “we don’t know why they keep referring you here, we don’t offer those services.” Then I finally called shield and they were explaining she didn’t qualify for drugs. I had to go back to the original vendor to get the list of what they sent her in the past, had to go to the MD to get an
that they know my daughter has a life;me need for?” – CCS/ CYSHCN Family Focus Group
UCSF FAMILY HEALTH OUTCOMES PROJECT
88
Organiza/on of Services -WCM: What We Heard
were eligible], but it isn’t anymore. The whole child model —people are struggling because they are CCS eligible, but not allowed to use CCS fee-for-service. Half of them haven’t even read it at [redacted name of health plan] and cannot interpret it. Pregy much didn’t tell us anything un7l it happened. It is difficult now because we are really CCS clients, but we can’t use it. [Health plan] is s7ll figuring out how to fit it into their system.” – CCS/CYSCHN Focus Group
UCSF FAMILY HEALTH OUTCOMES PROJECT
89
Health Plans: Family Survey
Do you need more informa7on about: % CCS 26.1 Medi-Cal 23.5 Private Insurance 2.0 Do not know 2.3 My child is not insured 0.1 I do not need more informa7on 55.0 Do you know whom to call to get answers about your child’s care or insurance (for example if services are denied and you want to ask why)? % Yes 69.5 No 10.5 Not sure 9.2 Not applicable 1.2 Missing 9.6 Do you know how to file a grievance or complaint about your child’s health care? % Yes 41.9 No 30.3 Not sure 14.5 Not applicable 3.2 Missing 10.0 If yes to Q28, have you ever filed a complaint? % Yes 38.9 No 18.1 Not sure 10.0 Not applicable 2.1 Missing 0.5
Interpreta/on Services: Family Survey
Is English the primary language spoken in your home? % Yes 70.0 No 29.5 How ozen do you need an interpreter to help you speak with doctors and nurses? % Always 39.8 Usually 11.8 Some7mes 18.3 Never 8.7 How ozen are interpreta7on services available? (for those who always, usually or some7mes need an interpreter) % Always 69.1 Usually 17.3 Some7mes 11.3 Never 0.8
Coordina/on of Services: Family Survey
How ozen are your child’s services coordinated in a way that makes them easy to use? % Always 53% Usually 29% Some7mes 14% Never 4% How ozen is it easy to coordinate therapy (physical therapy, occupa7onal therapy) for your child in the school sepng? % Always 49% Usually 21% Some7mes 10% Never 7% Do not know 12%
Impact on Families: Family Survey
How many hours per week do you or other family members spend arranging or coordina7ng care? % 0 to 5 65.0 6 to 10 14.1 11 to 15 5.1 16 to 20 2.4 20 + 13.4 How many hours per week do you or other family members spend providing care for your child’s medical condi7on at home for your child? % 0 to 10 50.8 10 to 20 10.4 20 to 30 6.8 30 to 40 4.1 40 to 50 3.6 50 to 60 2.2 60 to 70 2.1 70 + 20.0 Have you or other family members ever cut down on hours
your child’s health? % Yes 54.0 No 43.3 Do not know 2.6
Case Management/Care Planning: Family Survey
In addi7on to yourself and your family, who helps to arrange or coordinate care for your child? (check all that apply) % Nurse Case Manager 12.3 Health Plan 8.6 Regional Center 15.3 Special Care Clinic/Center 14.1 County CCS Case Manager 20.9 Childs school 4.6 Nobody helps 34.5 Dont Know/Not Sure 7.9 During the past 12 months, have you felt that you could have used extra help gepng, sepng up or coordina7ng your child’s care among the different health care providers or services? % Always 11.8 Usually 7.0 Some7mes 17.8 Never 43.1 Not applicable 7.3 Missing 13.4 Has a health care provider or case manager help linked you with support (e.g. family support groups, parent mentors, online support groups, etc.)? % Yes 32.8 No 30.5 Do not know 26.1 If you feel that more social and/or emo7onal support would help you or your family cope, what kind of social and/or emo7onal support would you like for you
% Online or telephone support group 18.2 In person support group 22.8 Parent mentor or parent partner 11.2 Not Applicable – no addi7onal support needed 42.1
Family Need for other Services – Family survey
below.
Received care (%) Always Usually Some Never
Respite Care 36.2 31.3 14.1 21.7 32.8 Genetic Counseling 16.3 51.7 5.6 14.6 28.1 Mental Health Care, Emotional Support or Counseling 37.5 37.6 12.7 24.9 24.9 Legal Issues 10.6 27.6 10.3 24.1 37.9 Housing Issues 12.6 27.5 13.0 20.3 39.1 Accessing Food Assistance and Other Govern 17.4 56.8 8.4 21.1 13.7 Other 4.0 40.9 18.2 27.3 13.6 During the past 12 months was there any time when you or other family members needed the following services and did not receive them?:
Of those with any need, % needing service
Organiza/on of Services: CCS Standards and Enforcement
25.7% 5.51% 22.0% 29.2% 10.2% 21.0% 29.2% 10.2% 21.0%
7.6% 25.2% 13.3%
6.3% 33.9% 15.2%
0% 5% 10% 15% 20% 25% 30% 35% 40%
Regular facility site visits are an important part of monitoring and enforcing regula7ons/Numbered Legers. The state CCS program has adequate capacity (i.e. staff, clinical exper7se, funding) to conduct periodic facility site visits to monitor and enforce regula7ons/Numbered Legers. Facility site visits are conducted by a mul7disciplinary team of state staff and consultants who are experts in their fields.
Strongly Disagree Somewhat Disagree Neutral Somewhat Agree Strongly Agree
Organiza/on of Services: Standards and Enforcement
CCS Administrator Survey: Comprehensive care coordina7on and oversight from State
Fully define and implement Case Management by the Health Plans Define, create, and implement standards for Medical
home. Finalize the Inter-County Transfer Numbered leger Improving the transfer process between coun7es - crea7ng a standard protocol for all coun7es to be on the same page Provide PDN (private duty nurse) Policy or Numbered leger
Extending CCS Eligibility: Provider Survey
44.8% 14.5% 40.7%
Yes No Don’t Know/ Not Sure
0% 10% 20% 30% 40% 50%
Should eligibility for certain CCS conditions (e.g. hemophilia or cystic fibrosis) be extended to 65 years old, at which time Medicare would be available?
N = 145
Which CCS condi7ons should be extended to 65 years old? (Provider Survey, open- ended, N = 68) Themes and quotes:
chronic and will last into adulthood, e.g., cerebral palsy, muscular dystrophy, spina bifida
finding adult providers who are familiar with childhood condi7ons. Adult providers do not have the infrastructure to coordinate care”
PKU, Fagy acid oxida7on defects, urea cycle defect, etc... There are no adult physicians trained in metabolic/gene7c disorders.”
Care Coordina/on: Survey Results
What differences, if any, are there in the coordina7on of health care for CCS versus non-CCS CYSHCN? (Provider Survey, open-ended ques7on) Key themes and quotes:
and mental health issues.
CCS pa7ents are provided by my team but are NOT reimbursed by anyone! It becomes essen7ally FREE care (RN, Soc Wkr, e.g.), which is not sustainable for large numbers of pa7ents.”
commercial pa7ents don't have.”
responsibility (CCS and health plan) leads to addi7onal work in seeking authoriza7ons, denials, etc.”
Care Coordina/on: Provider survey
Who Pays for coordina7on? (N = 125) % CCS 29.6 Medi-Cal Managed Care Health Plan 12.4 Private insurance 7.1 Philanthropy 2.9 No one pays for it, we just do it because it is needed 13.6 Don’t know/Not Sure 30.2 Other (please specify) 4.1 How important is it for you (or your prac7ce) to provide care coordina7on for CYSHCN? (N = 127) % Very Important 70.1 Important 11.8 Somewhat Important 3.2 Not Important 3.9 Don't Know/Not Sure 11.0
Telehealth Survey Results
Barriers to providing telehealth: (open-ended, N = 95) Themes and quotes:
resources needed
technology
Compliant) programs, portals, and electronic devices
using an interpreter”
*Note: Survey results only include nurses and physicians
40.9% 23.9% 16.9% 18.3%
Yes, I do provide telehealth Yes, I would be willing to No, I don't provide Don’t Know/Not Sure
0% 5% 10% 15% 20% 25% 30% 35% 40% 45%
Do you currently provide telehealth services or would you be willing to provide telehealth services to CCS clients?
Telehealth Survey Results
What steps should be taken to reduce barriers to providing telehealth services? (open-ended, N = 72) Themes and quotes:
at a health care center. Wouldn't it be great to conduct telehealth visits using a pa7ent's home???”
telehealth visit if they do not have access to the appropriate equipment
appointments and at the next available appointment when they haven't signed up yet.”
Medi-Cal Provider Network: Provider Survey
34.3% 35.5% 12.1% 1.8% 4.8% 11.5%
The Medi-Cal provider network presents challenges in terms of the availability and capacity of primary and specialty care providers.
Strongly Agree Somewhat Agree Neutral Somewhat Disagree Strongly Disagree Don’t Know/Not Sure
69.8% of Providers agree
MCHB Core Outcome #6: Transi/on to Adulthood
Youth with special health care needs receive the services necessary to make transi7ons to all aspects of adult life, including adult health care, work, and independence.
UCSF FAMILY HEALTH OUTCOMES PROJECT
104
Transi/on to Adulthood: What We Heard
Provider Focus Groups:
Family Focus Groups:
the age of transi7on yet; if they were above 14, most hadn’t been spoken to about it, but many were concerned what it would mean for their CYSHCN
the help of county case managers
UCSF FAMILY HEALTH OUTCOMES PROJECT
105
Transi/on to Adulthood: What We Heard
afraid to take on complex kids as adults.” – CCS Administrators focus group
may only see one HIV transi7on special health care needs kid, and they may only call them once and if they don’t show up, they say that is ‘too bad’ because they are adults and they can take care of
because of this, because they have had 10-12 regimens in their life7me and the MDs don’t have the capacity or the support groups to deal with the ‘born with HIV’ popula7on, they don’t fit into the behavioral health support groups for this.” – CCS Provider Focus Group
they transi7on it is hard to find a provider that understands the complexi7es of their disease, we have a lot of kids bouncing back and asking to be seen by us azer transi7on. Need a smoother transi7on.”
UCSF FAMILY HEALTH OUTCOMES PROJECT
106
Transi/on to Adulthood: What We Heard
Family Focus Group Parent:
“For us, it went smooth. We were not able to find an adult provider though; I pick up where Medi-Cal leaves
recommenda7ons and none of them would take her because of her need. The equipment that they gave us azer transi7on was good quality enough and we haven’t had a need for DME. This was before Whole Child Model, our case manager made sure that we had every bit of equipment we needed when she aged out.”
Transi/on to Adulthood: What We Heard
Providers suggested…
providers
already)
“We have sickle cell [transi7on] boot camps with donated money.
We start kids at 13. These exist all over the country; I don’t know how successful they are.”
Transi/on to Adulthood: Family Survey
Have doctors or other health care providers talked with your child about how their health care needs will be met when your child turns 21? % Yes 36.7 No 48.5 Do not know 11.5 Missing 3.2 Is your child 14 years or older? % Yes 27.1 No 62.5 Missing 10.4 If yes, were you able to find an adult doctor or provider? % Yes 59.4 No 12.1 Do not know 26.6 Missing 1.9 Have any of the following people
child find an adult medical provider? Check all that apply: % CCS 22.2 Health Plan 13.8 Our Pediatrician 13.5 None of the above 47.2
Strategies to improve Transi/on: Provider Survey
86.9% 86.1% 86.1%
7.6% 8.3% 10.4% 2.1% 0.7% 0.0% 0.0% 0.0% 0.0% 3.5% 4.9% 3.5%
0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0% 80.0% 90.0% 100.0%
A mul7disciplinary transi7on team including a Licensed Clinical Social Worker, Nurse, Case Manager, Specialty Care Provider, Primary Care Physician, Medical Therapy Assistance in finding a new primary care provider Assistance in finding a new specialty care provider
Youth who have aged out of CCS and have Medi-Cal would benefit from having:
Don't Know/Not Sure Strongly Disagree Somewhat Disagree Somewhat Agree Strongly Agree
UCSF FAMILY HEALTH OUTCOMES PROJECT
111
Families are Partners: Poten/al Priori/es
experiences
in decision making about their child
educa7on from Medi-Cal Managed Care
families in language that will make sense to them, with input from families and CYSHCN
inclusive of all DXs
UCSF FAMILY HEALTH OUTCOMES PROJECT
112
Medical Home: Possible Priori/es
for Medical Home programs
understanding across organiza7ons
can serve CYSHCN by providing addi7onal funding and incen7ves (i.e. loan forgiveness)
available to CYSHCN AND their families, if they already exist, increase them via funding
Model coun7es
the Health Plans
UCSF FAMILY HEALTH OUTCOMES PROJECT
113
Medical Home: Possible Priori/es (cont.)
home
favoring privately insured individuals
determinants of health and adverse childhood experience into the CCS program
(even if Health Plans are implemen7ng it)
families for mental and behavioral health issues
tradi7onal CCS children, and if not, find a way to provide the same level of care
Medical Home: Possible Priori/es (con.t)
more available to CYSHCN and their families
supply is covered by CCS (similar to what is done for private insurance plans)
and Provider Portal, Update MTU online Program and make web based and hosted by state so all documenta7on for CCS MTP clients can be universal allowing smother transfer or cases between coun7es
among CCS providers
UCSF FAMILY HEALTH OUTCOMES PROJECT
115
Early and Con/nuous Screening: Poten/al Priori/es
screened and appropriately referred to mental health services
to the High Risk Infant Follow-up Program (HRIF)
visits and developmental screening
services
Model coun7es
Insurance Coverage: Possible Priori/es
CYSHCN condi7ons (does not address emergent condi7ons that don’t qualify)
CYSHCN
diagnoses in order to mi7gate delays in care
considera7on of loca7on and family size.
UCSF FAMILY HEALTH OUTCOMES PROJECT
117
Transi/on to Adulthood: Poten/al Priori/es
transi7on to adult care
with SHCN pa7ents so that they can be used a resource during transi7on
be built into specialty care
UCSF FAMILY HEALTH OUTCOMES PROJECT
118
Organiza/on of Services: Poten/al Priori/es
screened and appropriately referred to mental health services
referred to the High Risk Infant Follow-up Program (HRIF)
child visits
MTU services
Child Model coun7es
UCSF FAMILY HEALTH OUTCOMES PROJECT
119
Breakout Group: Assign Task Instruc/ons
laptop
group
UCSF FAMILY HEALTH OUTCOMES PROJECT
120
Breakout Groups: Mission
GOAL: Manageable list of priori7es for stakeholders to rank
UCSF FAMILY HEALTH OUTCOMES PROJECT
121
Next Steps: Ranking/Scoring Priori/es
Stakeholders will be emailed Priori7za7on spreadsheet to complete
priori7za7on criteria developed with Stakeholder workgroup
most Stakeholders selected for each criteria
Stakeholders
priori7es to be addressed
Next Steps: Developing Ac/on Plans
local CCS staff in the development of ac7on plans
implementa7on of ac7on plans
UCSF FAMILY HEALTH OUTCOMES PROJECT
123
References
Health Services. California State Auditor Report 2018-111. hgps://www.auditor.ca.gov/pdfs/reports/2018-111.pdf
Health (NSCH) data query. Data Resource Center for Child and Adolescent Health supported by Coopera7ve Agreement U59MC27866 from the U.S. Department of Health and Human Services, Health Resources and Services Administra7on’s Maternal and Child Health Bureau (HRSA MCHB). Retrieved [mm/dd/yy] from www.childhealthdata.org.
Children with Special Health Care Needs. hgps://mchb.hrsa.gov/maternal-child-health-topics/ children-and-youth-special-health-needs
Factors Associated with Successful First High-Risk Infant Clinic Visit for Very Low Birth Weight Infants in California. The Journal of pediatrics.
Barriers to High-Risk Infant Follow-Up Care. American Journal of Perinatology.
Thank you for your par/cipa/on!
UCSF FAMILY HEALTH OUTCOMES PROJECT
125