CYSHCN Health – Annual Report (FY 2017-18)
CDPH/MCAH partnered with the California Department of Health Care Services, Integrated Systems of Care Division (DHCS/ISCD) and LHJs to promote developmental screening, improve local systems for referrals and linkages to services, increased access to primary and specialty care, and support provision of high quality health care including medical home and transition services for Children and youth with special health care needs (CYSHCN).
CYSHCN includes infants, children and youth from birth to age 21 who have or are at increased risk for one or more chronic physical, developmental, behavioral or emotional conditions and require special health and support services beyond that required for infants, children and youth in general.[1] The U.S. Health Resources and Services Administration, Maternal and Child Health Bureau, estimates (via the aggregated 2016-2017 National Survey of Children’s Health) that 14.1 percent (95% CI: 11.5-17.1) of California children aged 0-17 have special health care needs. (This translates to about 1.3 million children ages 0-17. However, due to low rates of developmental screening along with issues in reporting and data quality, it is likely that the true percentage of children and youth with special health care needs is higher than this estimate.)
The percentage of children with special health care needs in households with income below the poverty level is 5.1 percentage points higher than households with income at 400 percent FPL or greater (17.3% and 12.2%, respectively). The percent of children with special health care needs who have a medical home is 42.2 percent (95% CI: 32.3-52.8); however, this estimate should also be interpreted with caution as the width of confidence interval exceeded 20 percentage points and may not be reliable. Similarly, data on adolescents ages 12-17 with special health care needs who received services necessary for transition to adult health care (16.4%; 95%CI: 8.3-29.7) also need to be interpreted with caution as this estimate has a 95% confidence interval width exceeding 20 percentage points or 1.2 times the estimate and may not be reliable.
Overall, data quality has been a substantial challenge in accurately assessing the strength and availability of services as well as needs of this population. There is a need for expanded data availability and reliability, particularly in the areas of medical home, transition, and being able to access stable estimates by race/ethnicity.
California provides 30% (about $11 million) of Title V block grant funding to support CYSHCN. A portion of the total Title V funding that CDPH/MCAH received for CYSHCN was allocated to California Children’s Services (CCS), a state program designed to provide services to children and youth with the most medically complex health care needs. About 60% of the $11 million supported the CCS program, while the remaining 40% was allocated to LHJs and also provided support for state level coordination, information-gathering, and leadership.
The CCS program was administered by the DHCS/ISCD as a partnership between county health departments, health plans, and DHCS. DHCS/ISCD also administered a number of other programs to meet the needs of CYSCHN. These programs, which did not receive funding from Title V, are nonetheless relevant for the overall picture of services available to the CYSHCN population in California, are described below.
- The Medical Therapy Program is a special program within CCS that provided physical therapy, occupational therapy, and medical therapy conference services for children with disabling conditions, generally due to neurological or musculoskeletal disorders.
- The High Risk Infant Follow-up Program identified infants who may have developed CCS-eligible conditions after discharge from a CCS-approved Neonatal Intensive Care Unit (NICU) and provided diagnostic services for children up to three years of age. The Child Health and Disability Prevention Program is a preventive program that delivered periodic health assessments and services to low income children and youth. The Health Care Program for Children in Foster Care is a public health nursing program located in county child welfare service agencies and probation departments that provided public health nurse expertise in meeting the medical, dental, mental and developmental needs of children and youth in foster care.
CDPH/MCAH and DHCS/ISCD are committed to working in close collaboration to meet the diverse needs of all CYSHCN throughout the state, through family engagement, increasing access to and quality of care, and improving systems of care at the state and local level. Both CDPH/MCAH and DHCS/ISCD built efforts towards formalized family engagement. Examples included partnering with Family Voices of California on a team action planning process coordinated by the National Center for Family-Professional Partnerships. Additionally, DHCS/ISCD implemented a contract with Family Voices of California to increase awareness and participation in activities that engages families into partnership with systems and services.
CDPH/MCAH is currently engaged in a year of learning to connect with stakeholders, build partnerships, and expand knowledge about the greatest needs and opportunities to support CYSHCN and their families. The information gained will be integrated with priorities from the LHJ needs assessments to inform our state needs assessment and plan. As local, state, and federal priorities for serving CYSHCN evolve, CDPH/MCAH is committed to working closely and effectively with partners to respond proactively and ensure high-quality systems and services for CYSCHN and their families.
A new position was filled within CDPH/MCAH for a Project Director to guide and oversee CYSHCN efforts as well as activities funded through our partnership with DHCS/ISCD. The new CYSHCN Project Director and CDPH/MCAH Division Pediatric Medical Officer attended a training presented by the National Center for Family-Professional Partnerships, hosted by Family Voices of California, on Leading by Convening.
The CYSHCN Project Director and Pediatric Medical Officer have scheduled meetings and calls with numerous stakeholders and experts to build relationships and gain knowledge on existing systems and priorities for CYSHCN and their families. These stakeholders included: the California Perinatal Quality Care Collaborative and the Stanford University School of Medicine; the Lucile Packard Foundation for Children’s Health; pediatricians with the University of California, San Francisco, and University of California, Davis; the National Academy for State Health Policy; the Genetic Disease Screening Program in the CDPH Center for Family Health, and others.
In addition, a Masters student at UC Berkeley interned in the CDPH/MCAH Division and completed a number of interviews with other state’s CYSHCN Directors on innovative practices in their state Title V-funded CYSHCN programs. As part of her capstone project, she produced a report of her findings, which later became the basis for a webinar shared with stakeholders in August 2018.
CDPH/MCAH convened a diverse group of stakeholders including state agencies, non-profit foundations, health care providers, family representatives and others to begin our year of learning. Meeting objectives included: assessing strengths, needs and gaps in services and support available to CYSHCN; identifying key partners and developing strategies for ongoing engagement; and starting the conversation around priorities related to access to specialty and support services, medical home and transition to adult care.
CDPH/MCAH presented at a meeting of LHJs to share initial updates from the stakeholder meeting and next steps for CDPH/MCAH’s CYSHCN-focused efforts. In addition, CDPH/MCAH provided a number of training and technical assistance opportunities for LHJs on various CYSHCN topics including strategies for engaging parents, setting up a Help Me Grow central access point, and peer learning from best practices in other LHJs.
Over the past year, a substantial investment was made in learning, building relationships, and planning to improve California’s Title V CYSHCN efforts. The CYSHCN objectives and activities have been substantially updated and refined with our partners at DHCS to ensure clarity, recognition of data challenges, and a collaborative working relationship in our effort to improve services for CYSHCN across the state. These changes are reflected in the 19-20 plan.
Priority 4: Provide high quality care to all CYSHCN within an organized care delivery system.
By June 30, 2020, increase the children enrolled in CCS who receive primary and specialty care through a single system of care by 10%.
Objective 1: Strategy 1:
Refine the selected whole-child approach to optimize access to qualified providers.
Senate Bill (SB) 586 authorized DHCS to establish the Whole Child Model (WCM) program in designated County Organized Health System (COHS) counties to incorporate CCS program-covered services for Medi-Cal-eligible CCS program children and youth into a Medi-Cal managed care health plan contract. A beneficiary must meet financial, residential, and medical requirements to be eligible for the CCS program. The WCM is briefly described as an organized delivery system that will provide comprehensive, coordinated services for children and youth with special health care needs through enhanced partnerships with COHS that would improve access to care for CYSHCN and their families. This approach was consistent with the primary goal of providing comprehensive treatment and focusing on the whole child/youth, including the child/youth’s full range of needs rather than only CCS health condition(s) such as: cerebral palsy, sickle cell, cystic fibrosis, cancer, diabetes, leukemia, and hemophilia.
A stakeholder Advisory Group comprised of CCS providers, county CCS administrators, health plans and community/advocacy organizations provided expertise in the care of CYSHCN in the WCM. The goals of this stakeholder process included maintaining a patient- and family-centered approach, providing comprehensive treatment for the whole child/youth, improving care coordination through an organized delivery system, improving quality of care, streamlining care delivery, and maintaining cost neutrality. DHCS implemented WCM in 21 COHS counties.
In preparation for WCM implementation, DHCS held meetings with health plans and counties, to finalize the WCM Allocation Methodology and issuing the Memorandum of Understanding guidance to health plans and counties.
DHCS/ISCD maintained and updated the CCS Program standards for Hospitals, Pediatric Intensive Care Units (PICUs), Neonatal Intensive Care Units (NICUs), and Special Care Centers through the facility site review process. CCS-approved PICUs participated in the Virtual Pediatric Systems database and NICUs participated in the California Perinatal Quality Care Collaborative-CCS data reporting system. Periodic reviews of data enabled CCS to perform statewide benchmarking and quality improvement (QI), including addressing the needs of individual facilities.
Evidence-based and evidence-informed practices utilized for this strategy
The WCM is an organized delivery system that provided comprehensive, coordinated services for children and youth with special health care needs and its effectiveness as an approach has been well documented in the literature and successfully implemented in many other states.
Challenges for this strategy
Several requirements, such as readiness and deliverables submission, needed to be fulfilled by the health plans, counties, DHCS and the CCS Program in the identified WCM counties prior to the initiation of implementation.
Objective 1: Strategy 2:
Conduct and analyze surveys of CCS families and providers to assess satisfaction with organized care delivery system.
There were no activities during this time-period. DHCS will be conducting provider and family surveys with the upcoming 5-Year Needs Assessment.
By June 30, 2020, increase the number of CYSHCN who receive care within a medical home by 10%, as measured by the medical home CCS performance measure.
Objective 2: Strategy 1:
Review existing national, state, and local medical home models and tools and identify best methods for CCS to promote medical homes for CYSHCN.
Strategy 1 was completed in FY 2015-16 with no further action needed.
Objective 2: Strategy 2:
Develop and disseminate materials to facilitate implementation of tools that promote medical homes.
Strategy 2 was completed in FY 2015-16 with no further action needed.
Objective 2: Strategy 3:
Increase the number of counties with a family advisory council, parent health liaison family-centered care workgroup or other role supporting CYSHCN.
DHCS convened the Performance Measures Technical Workgroup to standardize and align performance measures across CCS programs. The finalized measures included family participation in the CCS program and informational trainings for increasing awareness and participation in activities that engaged families. DHCS convened the Performance Measures Quality Subcommittee to discuss technical specifications for standardized data pulls established by the work of the Performance Measures Technical Workgroup. The details of the measures were discussed and a final list was determined. The family engagement proposed measures involved the implementation of separate annual surveys for family satisfaction and family participation.
Examples of family engagement included participation on advisory committees, task forces, or family advisory councils, and family advocacy, either as a private individual or as part of an agency advocating family-centered care, wherein family members with experience with CYSHCN needs were contracted to provide family perspective and experience relative to navigating the health care delivery system. Under the WCM, health plans were required to create and maintain a family advisory council.
DHCS/ISCD finalized efforts to develop a Title V Family Delegate position by collaborating with Family Voices of California (FVCA) and developing a scope of work (SOW) for the proposed position. The SOW included providing culturally appropriate outreach materials to CCS families enrolled in the WCM to assist in navigating services and benefits; providing educational trainings to Family Resource Centers and families on the WCM; providing support to WCM families; collaborating with CCS on the design and implementation phases of needs assessments, strategic planning, annual reporting, public comment processes, and review of policy documents and outreach/educational materials.
Evidence-based and evidence-informed practices utilized for this strategy
CDPH/MCAH seeks to align with the goals of the federal Title V funding to provide “family-centered, community-based systems of coordinated care for CYSHCN,” with family-centered services defined as “the partnership between families and professionals at all levels working together for the best interest of the child and the family.”[2] CDPH/MCAH and DHCS/ISCD committed to building the capacity to support authentic family/professional partnerships through engagement and diverse representation of families at the state and local level.
Challenges for this strategy
CCS used the identification of a primary care provider as a proxy measure to ensure that CCS beneficiaries have a medical home. Consistent and reliable data reporting from all 58 counties on the identity of the primary care provider for each CCS beneficiary was challenging.
By June 30, 2020, increase by 20% the number of 20-year-old CCS clients with a transition plan of care documented by CCS county staff.
Objective 3: Strategy 1:
Identify county CCS transition strategies and best practices.
DHCS/ISCD continued to collaborate with Medical Managed Care Quality and Monitoring Division (MCQMD) on facilitating transition to adult services for CYSHCN. County CCS programs with robust transition programs provided input to DHCS/ISCD on transition planning and communications with managed care plans. DHCS/ISCD also discussed transition planning with county directors of the Medical Therapy Program, which served clients with cerebral palsy and other movement disorders.
CCS counties engaged in a variety of practices pertaining to transition services, including transition fairs and using county CCS parent liaisons and navigators that worked with families to identify pertinent community resources. Counties implemented transition planning, readiness assessment, and guidance on conservatorship. They had regular meetings with health plans and community-based organizations to identify physicians and services for CCS clients as they transition to adulthood.
Evidence-based and evidence-informed practices utilized for this strategy
Transition practices and policies are based on evidence-based interventions of the Six Core Elements of Health Care Transition (version 2) available at www.gottransition.org
Challenges for this strategy
Consistent and reliable data reporting from all 58 counties was challenging to the State.
Objective 3: Strategy 2:
Increase the number of family members providing input into the development of state and local transition practices and guidelines.
CCS worked with counties to increase family and youth input in transition policies by encouraging family and youth participation in transition planning and/or Special Care Center team meetings, participation in advisory committees or task forces, providing feedback regarding satisfaction with services, and/or serving as family advocates.
DHCS/ISCD implemented a survey on transition services targeting county CCS administrators to understand local achievements and areas needing improvement. The data gathered from the survey provided information, including whether CCS programs were obtaining input from family members on transition policies. The survey questions were developed based on information on transition processes shared by counties and input from DHCS/ISCD and MCQMD. Further input from families on transition practices will be obtained during the upcoming Needs Assessment.
Evidence-based and evidence-informed practices utilized for this strategy
Transition practices and policies are based on evidence-based intervention of the Six Core Elements of Health Care Transition (version 2) available at www.gottransition.org.
Objective 3: Strategy 3:
Identify options to track that CCS clients completed a visit with a managed care adult physician.
CCS county programs indicated that barriers existed to transitioning CCS clients to managed care physicians as they aged out of CCS services. These barriers included the limited number of adult providers willing to accept clients with complex medical needs; adult providers not accepting new clients; lack of managed care plan contracts with adult providers; long waiting lists for specialists; and lack of local specialists for specific conditions.
CCS determined that tracking a completed visit by CCS clients to managed care adult physicians should be part of transition planning. Options for tracking included coordinating with the adult providers in the managed care health plans to document a completed visit; following up with parents; and using the electronic health record if applicable.
Evidence-based and evidence-informed practices utilized for this strategy
Transition practices and policies were based on evidence-based intervention of the Six Core Elements of Health Care Transition (version 2) available at www.gottransition.org.
Challenges for this strategy
Consistent and reliable data reporting from all 58 counties was challenging to the State.
By June 30, 2020, increase the percent of CCS families reporting that their child/youth always saw a subspecialist when needed from 72% to 90%, based on CCS/Family Health Outcomes Project (FHOP) data.
Objective 4: Strategy 1:
Identify barriers to access CCS-paneled providers.
To ensure that discharged babies from CCS-approved NICUs had adequate follow-up, the NICU discharge plan included referral to the CCS High Risk Infant Follow-Up Program (HRIF), following determination of HRIF eligibility using specific medical criteria. HRIF ensured that there was a seamless referral to appropriate follow-up for NICU babies, thus eliminating the issue of having to identify the appropriate follow-up provider when the patient does not have one.
The HRIF Quality Care Initiative (QCI) continues to use a web-based data reporting system established in 2009. Quality improvement opportunities for NICUs are identified pertaining to the reduction of long-term morbidity. The reporting system allows HRIF local programs to compare their activities with other sites throughout the state, enables assessment of site-specific successes, and supports real-time case management. Data are collected on high-risk infants up to their third birthday and linked with the CPQCC database to identify maternal and perinatal factors associated with child outcomes.
The HRIF summary reports provide information on the follow-up status of enrollees, demographic/social risk information, status of medical and special service needs, and neurologic and developmental outcomes. Infants discharged from CCS-approved NICUs with CCS-eligible medical conditions or who are at high risk to develop such conditions are followed in an HRIF Program. Three multidisciplinary outpatient visits are authorized by CCS up to age three to identify problems, provide and complete referrals, and monitor outcomes. HRIF works with parents to assist them in ensuring return to follow-up by addressing issues such as barriers to transportation by working with a social worker, who is part of the HRIF team.
To assist in the delivery of preventive care for high-risk children, such as those in foster care, DHCS ISCD administers the screening component of the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) Program, known as the Child Health Disability Plan (CHDP). CHDP provides preventive services and referral to diagnostic and treatment services for Medi-Cal participants up to age 21. Uninsured children up to age 19 in households at or below 200% of the FPL can pre-enroll in Medi-Cal through the CHDP Gateway process.
Health assessments are a key component of a functioning health system, and the CHDP Program provides a mechanism so that EPSDT-eligible children have access to necessary preventive health assessments and direct referrals to a dentist.
The CHDP Program serves as technical advisors for health assessment schedules recommended by Bright Futures. It works with the Immunization Branch of CDPH to ensure that the administration of federally approved vaccines by Vaccines for Children providers is payable. The CHDP Program also supports follow-up referrals to dental providers.
Evidence-based and evidence-informed practices utilized for this strategy
Developmental screening and monitoring, as well as preventive screening are evidence-based practices. So identifying barriers to screening is a first step in improving screening rates.
Challenges to this strategy
A recent CCS Numbered Letter (policy letter) clarified the congenital heart disease eligibility criteria for HRIF after several questions were generated from an update of the HRIF Program and Numbered Letters. Constant communication, including data training webinars, provided prompt technical assistance to local HRIF Coordinators, ensuring the facilitation of eligible referrals.
Objective 4: Strategy 2:
Define and identify issues associated with access to durable medical equipment, pharmacy, home health and behavioral health providers.
Although CCS enrollees may be affected by issues that impact all Medi-Cal beneficiaries with respect to access to durable medical equipment (DME), pharmacy, home health and behavioral health providers, local CCS programs and designated DHCS staff work to resolve barriers to care for individual enrollees as they occur. Local CCS programs frequently work with the county, regional, and statewide provider community in developing solutions to maintain the efficient authorization of needed services. As an example, in 2014, due to reimbursement rate issues, the major Medi-Cal DME vendors expressed their intent in writing to stop accepting authorizations for DME services for all CCS and Medi-Cal beneficiaries not previously authorized for DME. Local CCS programs worked to identify smaller active DME vendors willing to accept CCS authorizations and were able to maintain access to DME services until the major DME vendors withdrew their concerns.
Durable medical equipment and pharmacy services are accessible to CCS enrollees through the Medi-Cal Program’s enrolled DME and pharmacy providers. Provider Enrollment Division (PED) is responsible for enrollment and re-enrollment of eligible fee-for-service providers into the Medi-Cal Program. One major activity performed by PED is to determine accessibility of providers to Medi-Cal beneficiaries, including CCS beneficiaries. PED instituted the PAVE (Provider Application and Validation for Enrollment) Portal, a web-based application system, greatly accelerating the provider enrollment process.
Keeping pace with changing pharmacy benefits resulting from newly approved and high cost medications is the greater challenge relative to maintaining pharmacy providers for the CCS program. The Medi-Cal Program’s Pharmacy Benefits Division is the principal source of DME and pharmacy reimbursement policy, which extends to the CCS Program. The CCS Program provides additional policy and information directives to CCS county offices and to fee-for-service providers through publication of the CCS Numbered Letters and CCS Information Notices. For calendar years 2017 and 2018, there have been 20 published numbered (policy) letters and four information notices. In addition, Medi-Cal Program publishes monthly or bimonthly provider bulletins, including for DME and pharmacy providers, and as needed NewsFlash publications in the Medi-Cal website. Providers as well as interested public/organizations/individuals may subscribe to the Medi-Cal Subscription Service (MCSS) for email updates to the latest Medi-Cal news/changes.
CCS medical eligibility does not include behavioral/mental health disorders. However, mental health services are a CCS benefit for the evaluation and treatment of a mental health problem when the requested service:
- Assesses and/or treats a mental health problem that interferes with, modifies, or delays the treatment of the CCS-medically eligible condition; or
- Assesses or treats a mental health problem that is a complication of the CCS-eligible condition or the medical treatment of the condition.
Generally, CCS behavioral/mental health services are not frequently required but are authorized to appropriate behavioral/mental health providers when necessary. Inconsistency in the authorization of these services was addressed in 2002 through CCS policy communication to local CCS programs (CCS Numbered Letter 11-1002). Access to behavioral/mental health services has not been identified as a significant issue for the CCS program in recent years.
CCS enrollees are authorized for home health services when medically necessary. Broader access issues, including geographic variation in provider participation and lower provider participation related to provider reimbursement rates, have affected home health services provided to CCS and Medi-Cal beneficiaries. Local CCS Programs and the State CCS Program nurses worked to identify active service providers willing to accept CCS authorizations. Additionally, the State worked on increasing Home Health Nursing rates. Providers have indicated an increase should help the State recruit Home Health Independent RNs and LVNs, Pediatric Day Health Care Centers, and Home Health Agencies in the State
Challenges to this strategy
Keeping pace with changing pharmacy benefits resulting from newly approved and high cost medications is the greater challenge relative to maintaining pharmacy providers for the CCS program.
By June 30, 2020, CCS county programs will demonstrate increased knowledge on billing processes for telehealth services.
Objective 5: Strategies 1-5:
- Updating existing telehealth codes in the Medi-Cal billing systems database.
- Distribute the updated CCS Numbered Letter (Policy letter) on billing guidelines for telehealth services.
- Develop and implement trainings for CCS providers on the billing guidelines for telehealth services.
- As part of the telehealth billing services trainings, conduct pre- and post-test evaluations.
- Post updated resources and FAQs on the DHCS Medi-Cal and Telehealth webpage.
ISCD is working on including CCS specialized billing codes for Specialty Care Centers and specialty consultations in the Medi-Cal claims system and is providing continued guidance on authorization and claiming of telehealth services.
Based on recommendations from the report of the August 2015 survey of CCS Administrators on telehealth by the Center for Connected Health Policy in collaboration with ISCD entitled Realizing the Promise of Telehealth for CSHCN, the Numbered Letter (policy letter) on Telehealth Services Code Update for the CCS Program was developed and released in December 2017.
The training curriculum for telehealth services has been developed. ISCD conducted teleconference discussions with selected CCS facilities on telehealth and NICU care, Pediatric Intensive Care Units, Unite (PICU) care, genetics counseling, among others. The Telehealth Medical Consultant conducted discussions with UC Davis Center for Health and Technology on the use of telehealth for teleaudiology, CCS Medical Therapy Units, and rehabilitation medicine. ISCD provided technical assistance to various local health agencies and CCS providers on the process of billing for telehealth services, including problem solving with CCS programs and billing units in the California Medi-Cal Management Information System and the claims contractor.
Planning continues for the CCS training webinars on billing for telehealth services, in consultation with UC Davis and CCS providers.
Evidence-based and evidence-informed practices utilized for this strategy
The effectiveness of pediatric telehealth is well established. ISCD participated in the August 2015 report published by the Lucile Packard Foundation for Children’s Health: “Realizing the Promise of Telehealth for Children with Special Health Care Needs”.
Challenges for this strategy
Funding sources may have to be determined for CCS regional trainings and stakeholder workgroup meetings.
[1] McPherson et al (1998) Pediatrics 102/1.
[2] Family Engagement in Title V, published by AMCHP, May 2015. http://www.amchp.org/programsandtopics/family-engagement/ToolsandResources/Documents/FamilyEngagementinTitleV.pdf.
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