Cross-Cutting/Systems Building Domain

FY20 Application

 

 

The FY20 workplan for the Cross-Cutting/Systems Domain includes the following performance measures:

1.     Family Engagement
2.     Youth Engagement
3.     Early & Continuous Screening (Newborn Screening)   

 

 

Program Overview

 

The Division of Child and Family Health (DCFH)’s CYSCHN Program is led by Marcus Allen, MPH (CYSCHN Director).

 

The program is detailed in the CSHCN Domain application.

 

 

FY20 Application Overview

 

Strategy: Assure families of children with special health care needs partner in decision making at all levels and are satisfied with the services they receive (CYSHCN National Standard: Family Professional Partnerships / Cultural Competence).

Domain: CSHCN, Cross-Cutting/Systems

 

 

The regional Care Connection for Children centers (CCC) will continue to employ parent coordinators as staff and they will actively engage families in order to offer resources and support. Most of the parent coordinators have a child with a special health care need so they understand the unique challenges families face. In addition to providing general support to families, parent coordinators in various regions across the Commonwealth work to: maintain center resource lists; create newsletters; lead educational activities and trainings; and work closely with families on overcoming barriers to care. 

 

Another one of our core programs, the Child Development Centers (CDCs) also actively engage families.  The CDCs provide assessments of children suspected of having developmental and/or behavior conditions.  Families are an active part of the assessments that are done and they receive documentation regarding diagnoses.  In addition, center staff members refer them to clinical and non-clinical resources for assistance and share the results of their assessments with other providers serving the family.  

 

The Virginia Bleeding Disorders Program (VBDP) and the Sickle Cell Program (SCP) will continue to have a number of programs/events to support families in decision making at all levels.  The VBDP educates families on home therapy management for those who infuse at home.  The SCP centers offer genetic counseling to aide in future reproductive decision making.  The regional centers provide events for families, including social gatherings and overnight camps with educational and group activities focusing on transition and self-advocacy. The program will continue to provide basic information about SCD and a forum for families to discuss the challenges for caring for an infant with SCD. Social workers will continue to send out pertinent information for families as topics arise pertaining to medical advances in SCD.  Families with newborns diagnosed with SCD will be given a copy of Hope and Destiny: A Patient’s and Parent’s Guide to Sickle Cell Anemia and patients entering the transition phase will be given a copy of Hope and Destiny Jr (as funding allows). 

 

Some of the blood disorders programs (sickle cell and bleeding disorders) want to strengthen family engagement in FY 20. One of the hemophilia treatment centers’ goal is to implement a working consumer advisory board for the patient population to assist in program planning and management. Patients will be invited to participate in two meetings annually to discuss the needs of the bleeding disorder community.  One of the sickle cell clinics plans to expand their current Ambassador Program.  The social worker will hold monthly meetings with designated ambassadors.  The monthly meetings will address: (1) ways to educate the public on sickle cell disease, (2) ways to celebrate individuals diagnosed with sickle cell disease and families, and (3) ways to provide ongoing support for families in need. In addition to the monthly meetings, ambassadors may attend legislative meetings such as Annual Advocacy Day.

 

All CYSCHN centers will continue to work with the VA DOE to help families navigate the education system. DOE consultants do not serve as advocates, but they are a very valuable source of knowledge to help families and staff understand how the school system works when it comes to supporting CYSHCN. CCC centers will continue to help families navigate Medicaid, find resources to pay for DME/medications, and identify resources/providers.  CDCs will continue to involve parents in assessments and continue to share their reports and results with parents/families. The CDC Program will continue to make referrals to outside providers to help families access needed services to manage children’s diagnosed conditions.

 

 

 

Strategy: Hire two part-time Youth Advisors to provide expertise, guidance and feedback on current and future public health initiatives.

Domain: Cross-Cutting/Systems

 

 

 

Strategy: Fund regional Youth Advisory Councils to implement public health initiatives within their communities.

Domain: Cross-Cutting/Systems

 

 

VDH will amplify youth voice in Virginia’s public health initiatives by hiring two Youth Advisors in central office and funding regional youth advisory councils. Before now, the Adolescent Health Program has not had a structured way to include youth and family input in VDH’s programs. Youth Advisors in central office will have the opportunity to give input on a variety of public health initiatives that affect young people, thereby increasing family voice and equity in Title V programs. Additionally, Youth Advisors will develop a structure for Regional Youth Advisory Councils, who will not only influence Title V initiatives but will also plan and implement public health interventions in their communities. This youth advisory structure allows for timely direct input from youth on VDH programs and equitable geographical representation on the regional youth advisory councils.

 

About the Emerging Youth Advisor and Youth Advisory Council Program

 

One of the emerging priorities of VDH’s Title V Program is increasing family and youth engagement in Title V-funded initiatives. As a result, VDH’s Adolescent Health Program must establish a structure that consistently brings youth voice into adolescent health programs. The Adolescent Health Program proposes two separate initiatives: Youth Advisors in Central Office and Regional Youth Advisory Councils.

The Adolescent Health Program plans to hire two paid part-time Youth Advisors to serve as youth culture experts and consultants. These Youth Advisors would be wage employees in VDH’s Central Office in Richmond, providing expertise, support, guidance and feedback to improve and effectively engage youth and young adults in VDH’s programs. The Youth Advisor position will be term-limited to two years. Applicants must be between the ages of 18-21. With the guidance of the Adolescent Health Coordinator, Youth Advisors will provide feedback on current and future adolescent health initiatives and develop and manage the Regional Youth Advisory Program.

 

Long-term, VDH hopes to fund five regional Youth Advisory Councils: Northern Virginia, Eastern Virginia, Central Virginia, South/Central Virginia and Southwestern Virginia. The vision is that agencies from each of these regions will have an opportunity to apply for funds to manage the Youth Advisory Councils in their region. Agencies will support youth in planning and executing public health projects within their communities, as well as creating regular reports for VDH about what the Adolescent Health Program should prioritize. VDH hopes to host a yearly summit where youth from regional councils will have an opportunity to develop valuable leadership skills and present to VDH staff and stakeholders about what they see as the major public health issues in their communities.

 

For the first year, in FY20, two Youth Advisors will be onboarded. They will assist with developing the first regional Youth Advisory Council in Richmond (Central Virginia).

 

 

Strategy: Engage youth and families in program development and outreach for medical home and transition (Standard: Got Transition’s Six Core Elements of Health Care Transition – Transition Completion & Youth and Family Engagement).

Domain: CSHCN, Cross-Cutting/Systems

 

 

During FY20 the CYSHCN Program and Adolescent Health Program will partner to increase family/youth engagement.  Program efforts will focus on transition and are designed to improve outcomes for the adolescent and CYSHCN populations.  taff will engage the state’s Family MCH Delegate, organizations like Kids As Self Advocates (KASA), the Virginia Board for People with Disabilities, and others to explore strategies targeted at youth. The ultimate goal is to encourage young people to promote transition improvement strategies amongst their peers. 

 

Activities were informed by results of Virginia’s Got Transition self-assessment conducted in May 2017. The Adolescent Health Domain Team Lead and the CSHCN Domain Team, which includes the Family MCH Delegate, jointly prioritized activities.

 

 

 

Program Overview

 

The Code of Virginia mandates that all Virginia infants are screened for thirty-one disorders tested through dried blood spot (DBS) screening, Critical Congenital Heart Disease (CCHD) and hearing loss within 24-48 hours of birth and/or before discharge from the hospital. The Virginia Newborn Screening program consists of DBS newborn screening, the Early Hearing Detection and Intervention (EHDI) and CCHD follow-up teams.   The DBS and EHDI teams track and follow-up on all out-of-range results, facilitates access to specialty services for further testing and confirmation of diagnosis, and infants that are diagnosed with a newborn screening disorder are referred to Care Connection for Children Centers (CCC) for care coordination services. EHDI also refers diagnosed infants to Early Intervention (EI) and maintains contracts with multiple institutions to assure family-to-family support and a hearing aid loan bank. The DBS program also maintains contracts with four regional medical centers to assure diagnosis and treatment of infants who screen positive for a dried blood spot genetic disorder.  The CCHD team primarily confirms diagnosis reported from hospital facilities, refers diagnosed infants to CCC programs and performs QA/QI by analyzing CCHD data to assure that reporting is consistent, accurate and complete.

 

 

Snapshot of Program Accomplishments

 

Key FY18 accomplishments are detailed in the Perinatal/Infant annual report. In addition:

 

• The Virginia EHDI program collaborated with the OFHS Communications Team on a variety of media, including its logo. Videos were produced (e.g. EHDI Learning Communities, February 2019: https://www.youtube.com/watch?v=igHKK8ZiTXQ; Parent Perspective, February 2019: https://www.youtube.com/watch?v=Z0nd0raHQWo). Branded educational brochures were also produced (e.g. Are You Sure Your Baby Hears…Everything?, What Is My Baby Hearing?).
• The Zika Pregnancy Registry collaborated with OFHS Communications on a “Zika and Pregnancy” brochure, available at: http://www.vdh.virginia.gov/content/uploads/sites/150/2017/06/ZIKAPregnancyBrochureWEB.pdf

 

 

 

FY20 Application Overview

 

Per the Code of Virginia, all infants born in Virginia are to be screened for thirty-one errors of metabolism, critical congenital heart disease (CCHD) and hearing loss.  Virginia’s newborn screening (NBS) programs, as well as its birth defects surveillance program, are housed under the Division of Child and Family Health (DCFH) and managed by Jennifer Macdonald, Public Health Nurse Manager.  Each program has a team that utilizes specific, evidence-based approaches to education, tracking of screening results, follow-up, facilitating access to diagnostic and specialty services and referring to supportive services, post diagnosis. 

 

The VDH Newborn Dried Blood Spot Screening (NBS DBS) Follow-Up Program and the Department of General Services (DGS) Division of Consolidated Laboratory Services (DCLS) work in close collaboration to maintain the operations of Virginia’s NBS-DBS program.  This program is solely funded through fee-for-service enterprise funding. Fees are collected by DCLS from medical providers who perform the collection of DBS specimens. The current fee is $101.20/infant. Fees are evaluated periodically and typically increased when new disorders are added to the panel in order to cover the cost of supplies, equipment, staffing and management of obtaining confirmatory diagnostic services, etc. VDH receives approximately $1.6 million annually from the enterprise fund via DCLS to conduct follow-up activities.  The funding supports the DBS team who are VDH employees and co-locate at VDH and DCLS. The team consists of a program supervisor, 4.5 public health nurses and three administrative staff who follow over 15,000 infants who have abnormal or critical screen results.  Funding also supports contractual genetic services for four regional medical centers to assist in the follow-up of infants who screen abnormal for metabolic disorders. These centers provide healthcare provider consultation, diagnostic work-up of infants and treatment services once diagnosed.  Approximately 150 infants in the Commonwealth are diagnosed with a core NBS DBS disorder every year and then referred to CYSHCN care coordination programs for further support.

 

The voting membership of the Virginia Newborn Screening Advisory Committee consists of multiple stakeholders representing all aspects of the newborn screening system, including affected family and parent representatives.  This body meets bi-annually to provide consultation to the program and when needed, workgroups are convened to review disorders requested to be on the Virginia DBS NBS panel.  Starting January 1, 2019, the program implemented screening for two new disorders, Pompe and Mucopolysaccharidosis Type I (MPS I), and expanded its operations to seven days/week.  Currently, planning is underway to implement screening capability for two additional disorders, Spinal Muscular Atrophy (SMA) and X-linked adrenoleukodystrophy (X-ALD).  The program has recently received funding from CureSMA to assist in the implementation of SMA screening.

 

 

Strategy: Coordinate and partner with Virginia’s Part C program to ensure timely referral of newborns and infants into EI services.

Domain: Cross-Cutting / Systems

 

 

The Virginia Early Hearing Detection and Intervention (EHDI) Program provides technical assistance and follow-up for hearing loss newborn screening services.  The Virginia EHDI Program budget totals approximately $750,000 and is funded through a variety of federal grantors:  HRSA EHDI, CDC EHDI and HRSA Title V.   The funding supports the VDH EHDI team which consists of a program supervisor, two full-time follow-up specialists, 2 wage staff and fifty percent of an epidemiologist to support programmatic data needs.  Funding also supports contractual services with VDH Office of Information Management for IS support, Virginia Commonwealth University’s (VCU) Center for Family Involvement (CFI) and the University of Virginia’s (UVA) Hearing Aid Loan Bank (HALB). Program activities focus on meeting the overall goal of developing and maintaining a comprehensive and well-coordinated system of care that promotes early diagnosis and early entry into supportive family services.

 

A long standing goal of the program has been to increase family and health care provider engagement and leadership within the EHDI system.  A major component of the HRSA EHDI grant was to increase family engagement throughout the 1-3-6 process.  The Virginia EHDI Advisory Committee’s voting membership is now made of up of 25% parents and the co-chair is a parent of a child who is deaf/hard of hearing. The Virginia EHDI program has also coordinated and hosted may initiatives and events to engage families and healthcare providers together.  Along with outreach to many conferences and support group events, these include funding for regional 1-3-6 family educators and the implementation of six regional learning communities, which eventually transfer to parent lead communities, and the funding and hosting of a trauma informed care conference and the nationally recognized The Care Project retreat (http://www.thecareproject.com/retreats/).  Out of the EHDI Learning Communities came a Shared Plan of Care (SpoC) specifically for families and their primary professional support systems.  Guides/checklists have been created for families, providers, audiologists and Early Interventionists to assist them in their specific key roles and functions as it pertains to the navigation of services to a newly diagnosed infant in their first year of life. 

 

The program is additionally working on the requirement of HB2026 which was passed in the 2019 Virginia General Assembly and directs the Board of Health to amend regulations governing newborn screening to include congenital cytomegalovirus (cCMV) in newborns who fail their newborn hearing screening.  A total of $198,000 was included in the state general fund budget for FY20 to initiate the cCMV program at the state level.  First year funds will be utilized to hire a wage staff resource and make enhancements to the EHDI-IS.  Funding in subsequent state fiscal years will only support staff resources.  As of this application submission date, a statewide workgroup has drafted regulations and the Virginia EHDI Advisory Committee approved them and sent them to the Commissioner of Health to initiate the regulatory process on behalf of the Board of Health.  It is predicted that Virginia will go live with screening and follow-up activities in early 2020.

 

Another major focus of the Virginia EHDI Program is assuring infants diagnosed with any type of hearing loss are entered into the Early Intervention system in a timely manner and based on 1-3-6 national EHDI guidelines. The Virginia Department of Behavioral Health and Developmental Services (DBHDS) is the leady agency for Part C in Virginia.   Historical analysis of EHDI data reflects that mothers reporting less than a high school education or GED, mothers less than 20 years of age, African Americans and families in the Blue Ridge and Southwest regions of the state are less likely to enroll in EI services.  Since an automated referral system was added to the EHDI-IS,  the system has proven to ensure that all diagnosed children are referred to EI on a timely basis, but reporting of enrollment has declined due to factors such as FERPA requirements that DBHDS adheres to, lack of knowledge of reporting capabilities, and lack of knowledge and socioeconomic factors of families. The Virginia EHDI Program continues to partner with multiple stakeholders and spearhead efforts to educate and promote appropriate resources for families affected by a diagnosis of hearing loss, including VCU CFI 1-3-6 Family Educators, the Virginia chapter of Hands and Voices, and six regional Learning Communities. A collaborative effort with DBHDS will improve data sharing, ensure compliance with national guidelines and improve the quality of enrollment information reported to VDH.

 

 

Strategy: Coordinate and partner with external stakeholders to increase the percentage of birthing facilities that report CCHD information into the current IS from 65% (2018 baseline) to 75% by September 2020.

Domain: Cross-Cutting / Systems

 

 

Historically, Virginia’s birth defect surveillance program has been a passive one, but in the wake of the congenital Zika virus outbreak in 2016, a renewed interest and need for this important public health activity has arisen.  As of July 31, 2019, VDH will have completed the Zika Birth Defects surveillance project, funded and coordinated through the Centers for Disease Control (CDC).  This project included implementation of the Zika Pregnancy Registry (ZPR), following infants enrolled in the ZPR for 24 months, and case confirmation of all Zika related birth defects reported into the Virginia Congenital Anomalies Reporting and Education System (VaCARES) in 2016 and 2017. During this project, Virginia was one of two states to participate in the March of Dimes survey of women who participated in the ZPR to gain insight into their perceptions of health care, information and social supports.  Findings are soon to be published. This was a great educational experience for VDH and on the cusp of Zika virus surveillance, VDH will be well equipped to respond to emerging infections or conditions, such as Neonatal Abstinence Syndrome (NAS).

 

Title V funding has historically only funded the maintenance of the reporting system, VaCARES, and additional funding will now support critical staff positions to maintain, evaluate, plan and grow the program.  New Title V funding will support a Birth Defects Program Coordinator and contracted position to maintain the CCHD NBS program.  

 

CCHD NBS is considered a point-of-care test done at the bedside before discharge of the infant. If an infant fails its CCHD screening, immediate action is routinely taken before the infant’s discharge and well before it is reported to VDH. For that reason the Virginia CCHD NBS program centers its activities on confirmation of diagnosis, quality assurance and referral to services, which is more in alignment with current birth defect surveillance activities and thus moved to that team.  Historically, these activities were absorbed by DBS NBS staff and the program’s reporting system, VaCARES, maintenance are funded by Title V. In aligning with the birth defects surveillance program, Title V will now fund a contractor to continue CCHD NBS activities.  This increased staff resource will create the ability to expand CCHD-NBS activities beyond case confirmation and referral, but to include quality assurance, technical assistance, and educational outreach.  

 

 

Strategy: Partner with internal agency teams to identify needs, gaps and future direction of the current birth defects surveillance system.

Domain: Cross-Cutting / Systems

 

 

A comprehensive evaluation of the agency’s birth defects surveillance program and a short-term work plan will be completed by September 2020.

 

 

Consumer/Family Engagement & Partnership

 

VDH contracts with VCU CFI to implement the 1-3-6 Family Educators Program and assist in the start up and maintenance of six regional learning communities throughout the Commonwealth.

 

 

Emerging Issues

 

HB2026 cCMV screening and the implementation of two new NBS DBS disorders are described in the narrative above.

 

Birth defects surveillance related to NAS is also anticipated to impact the birth defects program resources and work.