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CHILDREN WITH SPECIAL HEALTHCARE NEEDS DOMAIN
SUMMARY/OVERVIEW
FY22 APPLICATION YEAR
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2021-2025 MCH Priority Needs Addressed in this Domain |
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Strong systems of care for all children |
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Finances as a root cause |
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Community, family & youth partnerships |
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IDENTIFIED NPMs/SPMs FOR STATE ACTION PLAN 2021-2025 |
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NPM 11 Medical Home (CSHCN ages 0-17 years) |
The NSCH (2018-2019) showed that 48.6% of CSHCN had a medical home. Children with a stable and continuous source of health care are more likely to receive appropriate preventive care. |
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NPM 12 Transition (CSHCN ages 12-17 years) |
The NSCH (2018-2019) showed that 14.5% of CSHCN ages 12-17 years were engaged in transition services to adult health care. |
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NPM 15 Continuous and adequate insurance (CSHCN Ages 12-17 years) |
The NSCH (2018-2019) showed that 66.9% of CSHCN were continuously and adequately insured. There were 32.3% of CSHCN that had public insurance, 61.6% private insurance, and 2.1% uninsured. |
During FY22, the following programmatic strategies and activities have been identified as methods to advance and improve outcomes in this domain.
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IDENTIFIED STATE PRIORITY |
Strong systems of care for all children |
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STRATEGY 1: |
Seek new partners to promote the UVA/VDH collaborative online training module for healthcare providers and families regarding comprehensive care approach to the provision of a medical home for children (including (CYSHCN) |
The transition and medical home education online modules were launched in Fall 2019 after more than two years of development. VDH plans to continue to meet with UVA and our goal will be to seek broader utilization of the modules among providers to promote medical home and its key components as recommended by the AAP.
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Activity |
Expected Completion Date |
Responsible Staff |
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Renew contract with UVA |
7/1/2022 |
CYSHCN Director |
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Hold quarterly meeting with UVA to encourage promotion of the resource. Discussions will include a stronger partnership with the AAP and other organizations and broader sharing of the resource at forums such as the AMCHP National Conference |
Quarterly |
CYSHCN Director, DCFH Director |
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Continue to communicate with partners to promote the modules |
Ongoing |
CYSHCN Director and UVA |
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Gather any evaluation data or feedback from UVA about the modules |
By 6/30/2022 |
VDH & UVA |
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Tracking of people who complete the modules |
By 6/30/2022 |
VDH & UVA |
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IDENTIFIED STATE PRIORITY |
Strong systems of care for all children |
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STRATEGY 2: |
Assure children with special healthcare needs receive coordinated, ongoing, comprehensive care within a medical home (CYSHCN National Standard: Medical Home). |
As a unit, the CYSHCN Team will continue to require that all of its programs include work plan language regarding promoting the importance of a medical home to all families served. These requirements will continue to go beyond promotion and require that centers connect families to a medical home, if they do not have one. The CCC Program will continue to work directly with primary care and specialty care providers to provide care coordination services for families and help link them to services as needed. The Program will also continue to help obtain prior authorizations; explain health insurance/benefits to families/link families to sometimes hard to find durable medical equipment providers; and help to overcome any barriers that are making it difficult for the child with special needs to get services. The CDC program will continue to serve as a resource for providers and families to provide assessments of children suspected of having developmental or behavioral conditions. Upon diagnosis, the centers will share results with families and providers (as approved by parents) and will connect diagnosed CYSHCN to resources within their own community. In addition, Central Office staff will work with state Medicaid and Managed Care Organizations to address any reimbursement issues that may arise, as has occurred in previous years. The VBDP and Pediatric Comprehensive Sickle Cell Centers will continue to partner with medical homes to coordinate care in partnership with families.
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Activity |
Expected Completion Date |
Responsible Staff |
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Partner with family-identified medical home to coordinate care for CYSHCN served through CCCs, CDC, SCPs, and Bleeding Disorders programs |
Ongoing |
CYSHCN Director, Blood Disorders Program Coordinator |
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Partner with family-identified medical home to coordinate entry into specialty care for newborns with positive hemoglobinopathy screening |
Ongoing |
Blood Disorders Program Coordinator |
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All CYSHCN programs will continue to promote medical home and help families find one if needed |
Ongoing |
CYSHCN Director, Blood Disorders Program Coordinator |
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Seek update from State/National AAP to see if they are still interested in promoting the fact sheet for pediatricians on the National Survey of Children’s Health. The document focuses on medical home and the plan was to promote the fact sheet here in Virginia |
By 6/30/2022 |
CYSHCN Director, Blood Disorders Program Coordinator, State/National AAP |
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CYSHCN Leadership will continue to work with state Medicaid on any issues that may be a barrier to care for the children served by the program |
Ongoing |
CYSHCN Director, DMAS, MCOs, CDCs
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IDENTIFIED STATE PRIORITY |
Strong systems of care for all children |
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STRATEGY 3: |
Through the CYSHCN network, facilitate access to comprehensive medical and support services that are collaborative, family-centered, culturally competent, fiscally responsible, community-based, coordinated and outcome-oriented to CYSHCN and their families (CYSHCN National Standard: Easy to Use Services and Supports/Care Coordination) |
The CYSHCN program in Virginia partners very closely with major medical centers across the state. Contractual partners include: Children’s Hospital of the King’s Daughters in the Tidewater Region, the University of Virginia Health System in the Blue Ridge region, Carilion Health System in the Roanoke/southwest region, INOVA Health System and Children’s National Medical Center in the northern region, and Virginia Commonwealth University Health System in the central region. This partnership benefits families tremendously because they are able to receive the services they need through one “open door”. For example, children with sickle cell disease often need care from several specialty providers such as nephrologists, neurologists, and radiologists. The health systems VDH partners with readily refer children to specialties within their own health system and services are generally offered on the same campus. This same benefit exists for CYSHCN served through the CCC, CDC, and bleeding disorder programs.
Two of the SCP sites implement satellite clinics in areas with geographic need for services in order to improve family access of care. They also address issues of family support, health insurance, and identify transportation barriers for patients getting to appointments and provide assistance in obtaining bus tickets, Medicaid cabs, gas vouchers, etc. The centers refer patients to the appropriate community-based organizations, such as the Sickle Cell Association program, Catholic Charities, food banks and other community resources. The centers encourage staff and patients to participate in events such as Camp Young Blood, sickle cell walks, holiday parties and a sickle cell ball. Activities will continue to be limited in the upcoming FY due to COVID-19, but the centers will adjust to still make sure that the patients and families have the needed resources.
The VBDP program manager works with the Virginia Hemophilia Foundation on education to families regarding ED/EMS, dental services, and education regarding schools. VBDP helps families fill out applications for children to participate in a summer camp. In addition, families continue to have access to Virginia Department of Education (DOE) consultants and social workers who often work at program sites and function as part of a comprehensive team that strives to meet the needs of CYSHCN. Services provided in this manner help ameliorate barriers and assure that providers work together to most effectively serve families.
COVID-19 has made CYSHCN program work very challenging at times. Many of the CCC program care coordinators work from home and this will likely continue into FFY 2022. The staff have adapted well as much of their work is remote (in general). One of the biggest strengths during this time has been the trusting relationship that care coordinators have with their clients. They often have been a comforting ear for parents who needed someone to listen to them even if the care coordinator may not be able to provide them with a solution to their problem. Center program directors meet more frequently with the CYSHCN Director so that he can offer any needed technical assistance.
The CDC program is starting to overcome some of the challenges it faced regarding having to shutter services due to COVID. Centers are mostly back to full operation but COVID has helped them to be more flexible regarding the provision of services. Telemedicine has emerged as a complement to traditional in person services. Some staff have expressed that observing children in their natural environment/home has made them easier to assess because it helps to get rid of the anxiety many children feel when in a strange environment such as a clinic. In order to continue to improve, the CYSHCN Director will continue to work with one of the center program leads to hold regular virtual meetings. These meetings have been useful in helping centers work through challenging issues with reimbursement and telemedicine.
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Activity |
Expected Completion Date |
Responsible Staff |
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Conduct subrecipient monitoring to ensure partners meet required services levels for providing care coordination and other similar services |
Ongoing |
CYSHCN Director, Blood Disorders Program Coordinator |
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Maintain infrastructure for centralized data system (CCC-SUN) for use by statewide CCC staff to track and document case management and care coordination services, insurance type, pool of funds, and I&Rs |
Ongoing |
CYSHCN Director |
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Collaborate with CCC Directors to encourage staff to become and maintain certifications as case managers |
Ongoing |
CYSHCN Director |
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Convene center director/consultant meetings to provide technical assistance and troubleshoot issues. Staff will make annual site visits (when possible and after COVID restrictions are removed) and/or offer technical assistance via phone/email |
Ongoing |
CYSHCN Director, Blood Disorders Program Coordinator |
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CDC program will continue to provide assessments of children throughout the state of Virginia suspected of having developmental and/or behavioral conditions. Once diagnosed, the results will be shared with the medical home (with permission from the family) and children will be referred for services |
Ongoing |
CYSHCN Director, CDC Centers
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CYSHCN Program will continue to promote telehealth and support the CDC centers as they provide services remotely. Regular calls will be held statewide with centers to encourage teamwork to overcome barriers and to deal with any other program issues |
Ongoing |
CDC Centers |
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Sickle Cell Centers will continue to offer satellite clinics as capacity allows, as well as telehealth services. These off-site clinics are in two regions of Virginia and telehealth services during the pandemic improve access to care for families. |
Ongoing |
Blood Disorders Program Coordinator, Sickle Cell Centers
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Southwest Virginia CCC will continue to support onsite telehealth services for families in partnership with UVA |
Ongoing |
SWVA CCC Staff and UVA |
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IDENTIFIED STATE PRIORITY |
Strong systems of care for all children |
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STRATEGY 4: |
Assure youth with special health care needs receive the services necessary to make transitions to all aspects of adult life (including adult health care, work, and independence) through referrals to adult providers, utilizing transition tools when appropriate (CYSHCN National Standard: Transition to Adulthood) |
The CCC program will continue to use its program specific transition tool. This tool will be utilized to help families prepare their child with special needs to transition clinically, socially, educationally, and vocationally. All CYSHCN programs will be expected to support VDH in promoting the online transition modules to all of their partners and to families who receive services. The CDC program will continue to work with in-house Virginia Department of Education staff to refer older youth to their local school system for transition services when required (all youth served by this program are referred for clinical services as needed). The bleeding disorders program will continue to refer clients for adult services at VCU or within the client’s own community.
The sickle cell program has been working on establishing an Adult Comprehensive Sickle Cell Network for the past 2 years. This process required a change in state law, the drafting of new regulations, and the allocation of state general funds. The program is a priority of the current Governor and the goal is to establish at least 4 regional centers in the Commonwealth.
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Activity |
Expected Completion Date |
Responsible Staff |
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Through CCCs, facilitate transition from child to adult-oriented health care systems (e.g., transition planning tools, educational plans) |
Ongoing |
CYSHCN Director |
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Partner with Comprehensive Sickle Cell Centers to ensure that all transition-age patients complete the American Society of Hematology transition readiness assessment tool or a similar tool/process |
Ongoing |
Blood Disorders Program Coordinator |
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Partner with funded hemophilia treatment centers to ensure the transition process from pediatric to adult treatment centers (e.g., biannual transition calls between regional hemophilia treatment centers and the state’s only comprehensive adult treatment center; development of transition plan of care) |
Ongoing |
Blood Disorders Program Coordinator |
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Encourage all CYSHCN programs to promote the transition and medical home community/family modules and provider modules |
Ongoing |
CYSHCN Director, Blood Disorders Program Coordinator, UVA Development Team |
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Complete the process of establishing and Adult Comprehensive Sickle Cell Network by executing contract with regional providers |
Ongoing |
Blood Disorders Program Coordinator |
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IDENTIFIED STATE PRIORITY |
Finances as a root cause |
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STRATEGY |
Collaborate with Medicaid to strengthen the relationship between Title V funded care coordinators and Medicaid-funded care coordinators. The goal is to fortify relationships (by region) to reduce barriers that families face and to ultimately improve their outcomes. |
The CYSHCN programs will continue to help families struggling with insurance issues by connecting them to public and private options as needed. The CCC program reports that about 93% of CYSCHN served are insured and the CDC program reports that 99% are insured. As for the VBDP, 97% of patients have private or public insurance. The VBDP has a trained social worker who is very knowledgeable of health insurance options and works very closely with families to find the most cost effective insurance solutions that meet both family and client medical needs. One of the VBDP’s most important partners in this process is Patient Services Incorporated (PSI). PSI will continue to provide insurance case management and premium assistance to help eligible families maintain insurance coverage.
The expansion of Medicaid continues to be popular in Virginia and has been received well. Program partners continue to support families as they seek to access insurance options. This is critical for all programs but it makes the most difference for young adults transitioning and for people of all ages who have hemophilia. Since implementation of Medicaid expansion, the CYSHCN program has already had a number of clients with hemophilia transition to Medicaid.
VDH will continue to manage a Pool of Funds (POF) for the CCC and VBDP. The POF is the payer of last resort, and helps families purchase needed medications when no other viable options are present, including insurance. The Hearing Aid Loan Bank is located at one of the regional CCC centers and continues to provide gap-filling services to families of children with hearing loss.
VDH worked with DMAS (state Medicaid Agency) to coordinate a statewide (virtual) meeting about care coordination services provided by Title V funded care coordinators and Medicaid funded care coordinators. The meeting was a success as more than 300 people attended. The next step in this process is for the two agencies to work together to help care coordinators work more seamlessly by region. Our ultimate goal is to formalize partnerships by region so that staff can solve problems at their own level rather than having to reach out to VDH/DMAS central office for support.
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Activity |
Expected Completion Date |
Responsible Staff |
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Through CYSHCN programs, conduct medical insurance benefits evaluation and coordination, to include identifying potential Medicaid-eligible families, providing assistance with applying, and providing ongoing education and support to access covered services |
Ongoing |
CYSHCN Director, Blood Disorders Program Coordinator |
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Work towards increased support from health systems to pay for care coordination services through the CCC program |
Ongoing |
CYSHCN Director |
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Administer a Care Connection for Children pool of funds for payment of direct medical care services for the uninsured and underinsured clients |
Ongoing |
CYSHCN Director |
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Administer a bleeding disorders pool of funds for payment of direct medical care services for the uninsured and underinsured clients |
Ongoing |
CYSHCN Director, Blood Disorders Program Coordinator |
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Manage an insurance case management contract (PSI) to help assure people with bleeding disorders have ongoing access to insurance |
Ongoing |
Blood Disorders Program Coordinator |
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Continue to encourage social work support at the VBDP and SCP centers across the state |
Ongoing |
Blood Disorders Program Coordinator |
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Hold several brainstorming meetings with DMAS staff regarding strengthening regional partnerships for care coordination for Medicaid recipients. During FY21, VDH/DMAS led a statewide meeting to describe our care coordination work and to encourage continued partnerships. We will help to facilitate these partnerships in FY22 |
By September 2022 |
CYSHCN Director, DMAS Staff
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The Virginia Bleeding Disorders program will complete a needs assessment in partnership with Virginia Commonwealth University (VCU) to evaluate the extent to which the program serves its target population and is maximizing the funding based on changes in healthcare and treatment options. The needs assessment began in FY21 but is not complete |
By June 2022 |
Blood Disorders Program Coordinator, VCU Staff
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CYSHCN Director will fully implement new CCC and CDC work plan templates that include a focus on health equity |
By October 2021 |
CYSHCN Director, CCC/CDC Staff |
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VDH will explore a regional meeting in the SWVA area to discuss issues related to developmental/behavioral follow-up services. The proposed meeting would focus on potential solutions to the problem. This is a holdover from FY21. COVID made it impossible to hold this meeting |
By September 2022 |
CYSHCN Director, SWVA CDC Staff |
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