The perinatal period refers to the period immediately before and after birth. Perinatal and maternal health are closely linked. Infant health refers to the period before a child's first birthday, a very critical period in growth and development. Indicators of infant health, including rates of preterm birth, low birth weight, and infant mortality are considered indicators of the health of a population and its children. The RI MCH Program strives to ensure that all pregnant women receive appropriate prenatal care, which can affect both maternal and infant birth outcomes. The program is also working to reduce infant mortality by improving breastfeeding rates and safe sleep practices. Emphasis is placed on identifying pregnant and parenting families who are at high risk of negative outcomes and linking them to appropriate services.
Child Births
The total fertility rate of the U.S. in 2017 is 1,765.5 births per 1,000 women. In comparison, the Rhode Island fertility rate was lower at 1,508.5 per 1,000 women. In 2018, the total number of maternal resident RI births was 10,502, a decrease of 3.0% from the total number of maternal resident RI births in 2014 (10,831). This trend is not uniform across ethnic groups; from 2015 to 2018, there was a 55% decrease among Non-Hispanic White births and 26.2% increase in Hispanic births.
Low Birth Weight
In 2018, there were 798 infants were born with low birth weight, this represents 7.6% of all infant born. Of those, were 137 (1.3%) infants had very low birth weight (less than 1,500 grams) and 6.3% had moderately low birth weight (1,500 – 2,499 grams). Ninety-five percent 95.6% of all very low birth weight infant were born in a Rhode Island Level III NICU hospital. Racial disparities are also observed in low birth weight babies. The difference in low birth weight between non-Hispanic White (6.5%) and Non-Hispanic Black (11.1%) births is 4.6 per 100 births. Due to the high correlation between birth weight and gestational age, low birth weight tends to serve as a proxy measure for preterm birth.
Prematurity
The preterm birth rate in Rhode Island is 8.9% in 2018. This represents an increase from the preterm birth rate of 8.2% in 2017. Early preterm birth, defined as a birth at a gestational age less than 34 week, represented 2.6% all births. Late preterm birth, gestational age 34-36 weeks, represented is 6.3% of births. Preterm birth has been associated with other pregnancy risks in Rhode Island such as gestational hypertension and previous preterm birth. The difference in preterm births between Non-Hispanic White (8.0%) and Non-Hispanic Black (11.1%) births is 3.1 per 100 births.
Infant Mortality
Provisional data for 2018 indicate that the infant mortality rate in RI is 4.6 infant deaths per 1,000 live births. The perinatal infant mortality rate in is 4.8, the neonatal mortality rate is 4.0, and the post neonatal mortality rate is 1.0 per 1,000 live births. The preterm-related mortality rate in RI is 219.0 per 100,000 live births. In 2018, there were less than ten cases of Sudden Unexpected Infant Death (SUID). The Black/White infant mortality ratio for 2016-2018 is 3.8:1, with Non-Hispanic Blacks having infants having a mortality rate of 12.8 per 1,000 live births compared to that of Non-Hispanic White infants with 3.4 per 1,000 live births.
Newborn Risk Screening/Family Visiting
All infants born in Rhode Island are screened through RIDOH’s Newborn Risk Assessment Program. In 2018, 7,000 infants (63.5%) screened positive, indicating the presence of one or more risk factors associated with poor developmental outcomes. The Newborn Risk Screening Program also considers maternal risk markers. In 2018, 32.9% mothers were identified as having a history of a mental health outpatient visit, 7.2% of having history with substance abuse, 3.3% of a previous DCYF intervention, and 2.7% with a history of a chronic illness. All infants who screen positive are referred for a home visit. Of the 6,860 infants born in 2018 who were risk-positive for poor developmental outcomes and were not deceased, 2,432 (35.5%) received a home visit.
Breastfeeding
In 2017, 92.2% of RI resident births occurred in hospitals designated as Baby Friendly. According to 2017 NIS data, 80.5% of RI infants were ever breastfed and 21.5% of RI infants were breastfed exclusively through 6 months. Of the 7,769 women who initiated breastfeeding at maternity hospitals in 2017, women who had less than 12th grade education (49.0%), were single (51.1%) and had public health insurance at delivery (55.7%) had the lowest rates in Rhode Island.
Other Birth Outcomes
Hospital discharge data in 2017 shows that 112 newborns were discharged with neonatal abstinence syndrome, this represents a rate of 110.6 per 10,000 delivery hospitalizations. This is an increase from 2016 with a newborn rate of 95.1 per 10,000 live births. In 2016, PRAMS data shows that 77.2% of mothers reported that they most often place their infants to sleep on their backs. The 2017 birth defects prevalence rate in RI was 328 per 10,000 live births.
The RIDOH Breastfeeding Program works to enhance supports for pregnant and breastfeeding women and their families by building linkages between the birthing hospitals and the community, increasing awareness of breastfeeding as the optimal method of infant and young child feeding, and creating partnerships with health professionals and advocates throughout Rhode Island. The goals, objectives, strategies and vision for the program can be found in the 2015-2020 Rhode Island Breastfeeding Strategic Plan.
The WIC Breastfeeding Coordinator maintains a seat on the Board of the RI Breastfeeding Coalition (RIBC) and represents RIDOH in the work they complete. With its current capacity, RIBC completes the annual breastfeeding conference for professional development, and the annual community outreach zoo event held during World Breastfeeding Week in August each year, as well as partnering with RIDOH and the state WIC program to sustain the RI Baby Café ~ Olneyville and the Chocolate Milk Café at the Mount Hope WIC site in Providence.
An essential component of the Breastfeeding Program is providing quality breastfeeding support and education to all pregnant and breastfeeding women. At the program’s current funding level, the program continues to staff Peer Counselors in each WIC clinic, supply hospital grade breast pump rentals or manual breast pumps as needed, and staff IBCLCs to round in the birthing hospitals to provide breastfeeding support/education to all WIC active and eligible patients. This past year, efforts focused on the following strategies:
- Coordinate and standardize breastfeeding messages for all RIDOH programs that work with prenatal and postpartum women.
In the past year, work has been completed towards coordinating and standardizing breastfeeding messages for all RIDOH programs that work with prenatal and postpartum women. Content experts from both the Special Supplemental Nutrition Program for Women, Infants and Children (WIC) and Family Home Visiting programs, developed new education materials that are relevant and impactful. A distribution plan for the completed materials was developed and is being executed. Materials will be distributed through programs administered by RIDOH, as well as healthcare providers and birthing hospitals throughout the state. Electronic versions of the materials will be hosted on the RIDOH Breastfeeding website to be easily accessible. The English version of the nine tear-off pads of education materials have been developed and seven of the nine materials have been translated into Spanish. These materials will be distributed to WIC clinics and Family Visiting programs. Electronic versions of these materials will be available on the Breastfeeding Web page at RIDOH.
- Support efforts to increase access to IBCLCs & CLCs.
To increase both short- and long-term breastfeeding rates, RIDOH works to increase the public’s access to skilled lactation support; numerous studies have shown the impact of both lay and professional support in increasing breastfeeding rates. RIDOH continues to partner with the RI Breastfeeding Coalition (RIBC) and the state’s WIC program in supporting the sustainability of the RI Baby Café ~ Olneyville, a free, weekly support group that began in 2014 that expands access to a wide range of lactation professionals, IBCLCs, CLCs, and Peer Counselors, with no out-of-pocket cost to attendees. RIDOH and community partners continue to strategize how to increase participation and sustain support groups (baby café) in other communities throughout the state. Staff supporting the Baby Café are volunteers except for the WIC Peer Counselors. The Chocolate Milk Café began in the Mount Hope WIC Program, in 2018. This program is staffed by a volunteer and a WIC Peer Counselor. Strategies need to be implemented to have the ability for reimbursement by insurance companies. In April 2019, RIDOH hosted a Certified Lactation Counselor training in Providence, RI facilitated by Healthy Children Project, Inc. 50 diverse Staff from RIDOH Family Home Visiting and WIC, along with community members from Health Equity Zones completed the week-long training.
- Support baby-friendly hospitals statewide.
Rhode Island aims to achieve the Baby Friendly Hospital Initiative (BFHI) designation for all five of our state’s birthing hospitals. Currently, all but one facility maintains the designation. RIDOH plans to work closely with the remaining non-Baby Friendly designated hospital, as they work towards achieving the designation. RIDOH in coordination with the RI Breastfeeding Coalition will provide support in training and managing the necessary steps to move the process forward for Landmark Hospital.
To support the hospitals that are currently designated, RIDOH works with RIBC and our state’s largest birthing hospital, Women & Infants Hospital of Rhode Island, to host an annual Breastfeeding Conference, offering lactation specific continuing education credits for physicians, nurses, and lactation professionals. The 2019 conference was held on March 25th and was attended by over 100 health professionals from around RI and surrounding states.
- Provide education on breastfeeding resources such a free breast-pumps and insurance coverage benefits.
Edits to the RIDOH breastfeeding website are being completed with the department’s Communications team. These edits aim to provide a comprehensive resource for community members and professionals to access timely and accurate information on breastfeeding resources, such as education materials, information on insurance benefits such as breast pumps, and access to health and social service programs such as WIC and Family Home Visiting.
- The Breastfeeding Program will support efforts to increase the number of IBCLCs and CLCs of color to address disparities in infant breastfeeding rates.
This was accomplished by offering a CLC class for WIC Peer Counselors and other individuals from the community. RIDOH also needs to better understand the breastfeeding workforce (geographic location of service, organization affiliation, race/ethnicity, etc.). The MCH Program is also working with several internal partners to explore ways to recruit and train IBCLCs of color. This was an activity that was going to be supported by the CDC SPAN funding. In April 2019, RIDOH hosted a Certified Lactation Counselor training in Providence, RI facilitated by Healthy Children Project, Inc. 50 Staff from RIDOH Family Home Visiting and WIC, along with community members from Health Equity Zones completed the week-long training.
- RIDOH will continue to work with the RIBC’s Licensing Committee to ensure licensed lactation consultants are incorporated in health insurance reimbursement policies.
Licensure was created with the intention of expanding the lactation workforce, and improving the reimbursement potential of IBCLCs, therefore making their services more accessible 1) to individuals who cannot afford to pay out of pocket for their valuable service, and 2) outside of the hospital/clinic setting. This was an activity that was going to be supported by the CDC SPAN funding.
RIDOH has successfully administered evidence-based family home visiting programs since 2010. Rhode Island supports the implementation of three evidence-based models: Healthy Families America, Nurse-Family Partnership® and Parents as Teachers. In addition, for more than 20 years, RIDOH has supported First Connections, a RI grown, short term family visiting program. Prioritized populations, as designated by HRSA/MCHB include:
- Low-income eligible families;
- families that include a pregnant woman who is younger than age 21;
- families that have a history of child abuse or neglect or have had interactions with child welfare services;
- families that have a history of substance abuse or need substance abuse treatment;
- families that have users of tobacco products in the home;
- families that have children with low student achievement;
- families with children who have developmental delays or disabilities; and
- families that include individuals who are serving or formerly served in the Armed Forces, including families that have members of the Armed Forces who have had multiple deployments outside of the United States.
RIDOH would not be able to implement evidence-based home visiting programs without strong collaborations with key stakeholders and partners. Many of the community and state partners sit on the Governor’s Children’s Cabinet, Title V Maternal and Child Health Team, RI’s Early Learning Council, RI’s Early Intervention Interagency Coordinating Council, Successful Start Steering Committee, as well as others. The Family Visiting Program also continuously builds and maintains relationships with community-based social service providers, medical homes, behavioral health providers, substance use treatment providers and Health Equity Zone partners.
Furthermore, the Family Visiting Program collaborates with multiple programs within RIDOH.
- WIC – identifies and refers pregnant woman for services. WIC staff provide professional development training on infant feeding, nutrition, and breastfeeding to family visitors. WIC and family visiting work together to increase breastfeeding initiation and duration. In 2018, they worked to update breastfeeding materials and in April 2019, they co-hosted a Certified Lactation Consultant training for WIC and family visiting staff.
- Immunization Program - regularly attends family visiting local implementation team meetings to discuss relevant topics including flu, T-Dap and varicella, school-based vaccination clinics. The family visiting team regularly promotes vaccination clinics and vaccine information on the Family Visiting Facebook page and newsletter.
- Oral Health program - provides ongoing training on oral health issues to family visitors. The Oral Health team created community-specific materials that family visitors use to support families’ participation in oral health services. The Oral Health Program staff attend local implementation team meetings to understand barriers to accessing oral health care in specific communities. The two programs share data and work to promote preventative dental car for pregnant women as well as the age 1 dental visit.
- Project LAUNCH - identifies families that may benefit from family visiting. Family visiting continues to conduct regular developmental screenings and offers families services available through Project LAUNCH, such as Incredible Years and mental health consultation in pediatric practices. Project LAUNCH and the Family Visiting Program will be facilitating a parent/caregiver advisory council that will begin in July 2019.
- Continue to use evidence-based screening tools to identify family needs and make appropriate referrals to necessary services that support positive health outcomes for all family members.
The Family Visiting program continues to use evidence-based screening tools. The screenings assist in guiding visits, prioritizing family needs, and planning visits around those needs. The screenings begin during the first two to three visits with a family and continue periodically throughout a family’s participation in family visiting. Caregivers are screened for prenatal and postpartum depression, alcohol and substance use, and interpersonal violence. Families are offered referrals and are linked to care based on screening results. Children are also screened for developmental milestones, physical, social, and emotional health. Based on screening results, children are referred to supportive services, such as Early Intervention. With consent, family visitors also share concerns with medical providers including obstetricians and pediatricians. In the Fall of 2018, the Family Visiting program began participating in a national CQI initiative to improve screening rates and linkages to care for postpartum depression and reduce depressive symptoms in women with postpartum depression. The MCH Title V Coordinator is the CQI initiative’s senior sponsor.
- Identify, engage, and retain more families at risk for poor outcomes.
As of June 2019, MIECHV is at 90% contracted capacity. The Family Visiting program remains committed to working with RI’s most vulnerable families and providing support at critical points during the life course. By working with community partners such as the birthing hospitals, healthcare providers, substance use providers, Department for Children, Youth and Families (DCYF), family visiting is able to engage pregnant women that may be at risk for poor outcomes. Through the Newborn Developmental Assessment (Level 1 screening) done for every mother and baby at time of birth, 60-65% of newborns and their families are automatically referred to First Connections at birth. First Connections works with families to refer and engage high-risk families on long, term, evidence-based home visiting. The family visiting program works closely with the DCYF to identify and refer families that are involved with the child welfare system. DCYF has also increased referrals for families that are being investigated for child abuse, but may not have an indicated case and open to DCYF for further services. Additionally, the Family Visiting program is working with RI’s Department of Human Services to refer and engage families participating in TANF. Policies and procedures put in place by RIDOH’s Family Visiting program provide clear guidelines for consistent efforts to engage and retain families, as does ongoing sub monitoring of program implementation. Family visiting agencies are encouraged to use continuous quality improvement to test strategies to support both initial engagement and retention in family visiting.
- Improve the professional development system that is based on national core competencies for family visiting staff, including standardized orientation for all new staff and supervisors, including Title V priorities.
The Family Visiting Program provides a high-quality professional development opportunities to all home visitors in order to ensure a skilled workforce that is able to respond to the complex and evolving needs of families. RIDOH works closely with contracted agencies to identify additional training needs. Most recently, family visitors have been offered training on the following topics: reflective practice and supervision, working with families with substance use, safe sleep, working with refugee families, children with autism, infant feeding, breastfeeding, self-care, oral health, and supporting mothers with maternal depression. RI recently requested technical assistance from HRSA and is aligning the family visiting professional development plan with new national core competencies. RIDOH is also receiving technical assistance from HRSA on a standardized orientation processes for all new family visitors, supervisors, and program managers. To support reflective practice and supervision within all contracted agencies, RIDOH has developed a framework for reflective practice and supervision and infant/early childhood mental health consultation. The Family Visiting Program works closely with RI’s Association for Infant Mental Health to support family visitors and provide training related to behavioral health. In addition, the Family Visiting program has begun offering Brazelton training to some family visitors and will expand this offering in 2019 and beyond.
- Sustain and expand the Family Visiting Program by finding additional revenue streams.
Currently, RIDOH’s current capacity for evidence-based family visiting is 1,400 families statewide, however, many more vulnerable families could benefit from long term, evidence-based family visiting. While RIDOH has successfully maintained its federal funding, additional resources are needed to support the program. In 2018, RIDOH worked with RI Medicaid to include Healthy Families America and Nurse Family Partnership Home Visiting Programs in RI’s 115 Medicaid Demonstration Waiver. Approval by CMS was granted in December 2018. RIDOH is working closely with the Governor’s office to secure state funding in FY2021. Additionally, these programs have also been added to the Medicaid State Plan Amendment and RIDOH is working to identify a state match. While it was not approved in this year, RIDOH is already beginning to build the case for it to be included it in next year’s budget. RIDOH continues to work with state partners to identify opportunities for braided and blended funding. As RIDOH works to identify and engage more families in family visiting (Strategy 2), there is need to have more family visiting availability across the State.
Newport Health Equity Zone offers a “Women of Color Breastfeeding Support Group”. This group meets twice a month and is facilitated by a resident of the community, who is also a doula. The goal of this program is to create a safe space for women of color to latch, encourage and support them on their journey. During these meetings the group makes appropriate referrals to other RIDOH programs, such as WIC and Family Home Visiting. We will continue to promote all of the support group offerings to the HEZs to increase participation and breastfeeding rates/durations. 3 HEZ community members attended the CLC training in April 2019.
The Rhode Island Task Force on Premature Births - RI Task Force on Premature Births is a diverse coalition of community-based organizations, government agencies, and health care partners that is currently working on a variety of strategies designed to reduce the rate of premature birth and the morbidity and mortality associated with premature birth. The overarching values of the task force include: continued emphasis on policy and advocacy; focusing on preconception, inter-conception, and postpartum time frames for intervention; linking prenatal risk assessment and screening with referral resources; recognizing social and environmental determinants of health including racism; addressing cultural awareness and competency; and using data to drive action and evaluate effectiveness. The following workgroups have been formed to work on specific areas of concern related to prematurity: 17-P, Pre and Inter-conception Health, Tobacco Cessation, Pregnancy Risk Assessment, Data.
The Rhode Island Task Force to Support Pregnant and Parenting Families with Substance-Exposed Newborns (SEN Task Force) - The SEN Task Force was re-convened by the RI Department of Health (RIDOH) during the Spring of 2016 at the request of Governor Gina M. Raimondo. The SEN Task Force reports up to the Governor’s Overdose Prevention and Intervention Task Force and represents a dynamic multidisciplinary partnership across state agencies and community-based providers and stakeholders. Along with RIDOH, SEN Task Force representation includes the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH); the Rhode Island Department of Children Youth and Families (DCYF); Executive Office of Health and Human Services (EOHHS); substance use treatment providers; recovery support programs; prenatal providers; birthing hospitals; a range of family support programs; and professional and peer providers.
The mission of the SEN Task Force is to develop and build a comprehensive system of supports for women, newborns, and families by providing prevention and intervention opportunities to avoid or ameliorate the outcome of prenatal substance exposure along. This work is done across the continuum of care using the life course approach.
RIDOH staff play a key role in the leadership and administration of the SEN Task Force which meets bimonthly (every two months) and employs a dynamic workgroup structure as follows:
- Education: This workgroup is tasked with developing and disseminating Neonatal Abstinence Syndrome education to a variety of groups including but not limited to healthcare providers, early childhood providers, peer recovery coaches, substance use providers; and patients, and patients
- Hospital Policy: This workgroup is tasked with providing guidance and support for hospitals in their development of appropriate and consistent policies regarding identification and support for substance exposed newborns and their families
- Prenatal Referral and Linkage to Care: This workgroup is tasked with developing reciprocal referrals between prenatal providers, substance use treatment providers, and family visiting with family choice and family-focused coordination
- Peer Recovery Coaches: This workgroup is tasked with training and supporting a growing cohort of recovery coaches working specifically with with new and expectant parents in recovery
SEN 2018 Achievements:
- 79 people attended the 3rd Annual SEN Conference held October 19, 2018 at Rhode Island College, the purpose of which was to increase knowledge and decrease bias around families impacted by substance use.
- The SEN Interagency Coordinating Team was convened in August 2018 in response to recommendations that came out of Rhode Island’s participation in the National Governor’s Association Learning Learning Lab on Addressing Maternal Opioid Use Disorder to Prevent and Reduce the Effects of NAS.
- Rhode Island participated in the ASTHO OMNI Learning Community in August 2018 from which an Action Plan was developed with a focus on increasing screening for substance use disorder and decreasing stigma.
- The SEN Program continues to provide support to HEZs that are addressing maternal opioid use and substance exposed newborns as part of their work under the HEZ Opioid Overdose Response Grants, particularly the Pawtucket/Central Falls HEZ.
- Plan of Safe Care was launched July 1, 2018. Through March 31, 2019, 69.9% of the 253 identified substance exposed newborns born in RI and their caregivers received a Plan of Safe Care, with a total of 253 new referrals documented on those Plans of Safe Care.
- RI presented as part of an ASTHO OMNI webinar (March 2019). RI presented at the ACF’s Regional Head Start Meeting on the Opioid Crisis in NH (April 2019). RI served on a panel at the NGA’s Capacity Building Meeting in IN (June 2019).
- The SEN Task Force commenced a strategic planning effort that will run through 2020. A Key Stakeholder Group was convened, focus groups and a retreat are scheduled later this summer.
- The First Connections NAS Pilot launched May 2019 to bring First Connections into Women & Infants Hospital and follow families back out into their communities.
- 18 trainings on substance exposed newborns and Plan of Safe Care were held for pediatric residents, pediatricians, outpatient treatment providers, Birth Defects Advisory Council, Home Visiting, and the VA Medical Center Community Task Force.
Safe Sleep - A Safe Sleep Workplan was developed, the goal of which is to decrease infant sleep-related deaths throughout the state through training, education, resources, and community outreach. A Safe Sleep Program Coordinator was hired at 50% effort in January 2018. The Coordinator is responsible for a comprehensive safe sleep education program. The Coordinator also chairs the monthly Interagency Safe Sleep Workgroup comprised of representatives from the RIDOH (including Title V), Department of Children, Youth and Families (DCYF), the State’s Family Visiting Program, Early Intervention, and WIC amongst others. In 2019, the Safe Sleep Interagency Workgroup expanded its membership to include the following community-based organizations: Federal Hill House, Youth Build Prep, Women’s Resource Center in Newport, and One Neighborhood Builders. RI is participating in the Child Safety Network’s Safe Sleep Learning Collaborative
A two-hour training was developed. The objectives of the training include: understand 2016 American Academy of Pediatrics safe sleep recommendations; safe and unsafe sleep products and environments; barriers to practicing safe sleep; and, strategies to having effective safe sleep conversations with families. The following groups were identified as being priorities for safe sleep training in 2018: Family Home Visiting, EMS, WIC , DCYF, Early Intervention, and Early Headstart. Through 2018-2019 Eight safe sleep trainings were held for early education providers, early head start, early intervention, home visiting, police cadets.
Another goal of the Safe Sleep Workgroup is to support Rhode Island’s five birthing hospitals. Currently, RIDOH is supporting birthing hospitals’ efforts to standardize their safe sleep policies by encouraging them to become Cribs 4 Kids hospitals. RIDOH also provided over 10,000 copies of a DCYF-purchased book titled, “Sleep Baby Safe and Snug”. These books are being disseminated to families as part of their discharge packets. Additionally, NIH Safe Sleep information sheets in English and Spanish have been provided to hospitals for further patient education, and these sheets are currently being translated into Portuguese and Creole to support safe sleep education for these groups.
RIDOH has also required First Connections agencies within the Family Home Visiting Program become Cribs 4 Kids distribution sites. A tracking form was established by the Safe Sleep Program to ensure follow-through and information regarding who was receiving these cribs. All First Connections agencies became Cribs For Kids distribution centers, distributing 17 cribettes to families in need to-date.
The Safe Sleep Program also provides safe sleep information to the community at large. In 2018, Safe Sleep information was distributed at Parenting Matters, Youth-BUild, Narragansett Indian Tribe Women’s Day, Immunization Provider Conference, and a HEZ Learning Community Event in Warwick. More events are planned. A Safe Sleep PSA aired on the local ABC Channel 6 in February-March 2019.
Linking Actions for Unmet Needs in Children’s Health (LAUNCH) - The goal of LAUNCH is to ensure a system of identification (screening), recognition, and response to focus on preventing poor outcomes for children who may be at risk during early childhood, particularly for poor behavioral health. Rhode Island Project LAUNCH 2015 builds on the work of LAUNCH 2008 and Successful Start to expand four activities in three identified communities in need: Woonsocket, Newport, and Washington County. The activities are (1) mental health consultation within early care and education and primary care, (2) parent education and support for children and their families age 3-8 (including 0-3 as needed), (3) screening response and referral, and (4) systems alignment related to programs and policies.
According to the 2010 census, the three identified communities have a combined population of about 142,439. Between 2008 and 2013, there were 10,378 children who were born to families in these communities; approximately 64% of them were born to mothers who had 2 or more risk factors. Needs assessments document that these communities do not have the service capacity to meet the needs of the children birth to eight years who are at high risk. The specific LAUNCH 2015 activities will provide direct services to approximately 1,000 families. LAUNCH 2015 has a goal of providing 40% of its services to identified subpopulations, which would provide some amelioration of disparities. During 2018 and the first quarter of 2019, LAUNCH supported a total of 7 evidence-based Incredible Years parenting groups in the South County and Newport areas for parents of toddlers, preschoolers, and school aged children. In addition, LAUNCH delivered mental health consultation in primary care practices in all 3 communities and provided program-focused mental health consultation in 4 early care and education centers.
Newborn Screening Program - provides universal newborn screening for 32 core blood disorders, Critical Congenital Heart Disease, Hearing and Developmental Risk Assessment. In October 2018, RI began screening for 3 new conditions, Pompe, Adrenoleukodystrophy, and Mucopolysaccharidoses. The Newborn Screening Program assures screening and diagnosis for all infants born in the state. Abnormal results are tracked by the Newborn Screening Coordinator until resolved or a diagnosis is confirmed. Rhode Island’s five specialty clinics (endocrine, metabolic, hemoglobin, cystic fibrosis, and immunology) are responsible for reporting the diagnosis and treatment plan of all infants identified with a positive screen.
In 2018, 100% of infants received a newborn blood spot screening and 99.8% were screened for Critical Congenital Heart Disease (CCHD). 93.6% of infants with a positive newborn bloodspot screening received a confirmed diagnosis. The Newborn Screening Program and the Birth Defects Program continue to collaborate to track and identify cases of CCHD. Both programs trained the Cardiology Clinic to report confirmed cases of CCHD in the provider’s Birth Defects Registry.
Quality Improvement (CQI) initiatives are in place to ensure high rates of screening and follow up care. Some other CQI initiatives include specimen collection occurring with 24-48 hours of life, specimens arriving at the New England Newborn Screening Laboratory within 24 hours after collection, completion of all fields on the filter specimen slips, timely reporting of confirmed diagnosis into the electronic health information system, KIDSNET, yearly site visits at the five birthing hospitals, quarterly hospital report cards, monitoring data and system level issues, and ongoing review of policies and procedures by the Newborn Screening Advisory Committee. This Committee advises the Newborn Screening Program on strategic planning, policies and procedures, new conditions to be added to the RI newborn screening panel, and associated services. Members include health care providers, public health experts, and people involved in delivering services, follow-up, and treatment in the state. The RI Newborn Screening Advisory Committee meets on a bi- monthly basis.
The Use and Retention Policy for Residual Blood Specimens was approved by the Newborn Screening Advisory Committee and the Director of Health. Specimens will be stored for 23 years. Research involving residual specimens collected on or after March 18, 2015 will require parental consent. Research involving residual specimens collected prior to March 18, 2015 will be reviewed and approved by the Newborn Screening Advisory Committee and the Department of Health’s Institutional Review.
The Newborn Screening Program implemented Saturday courier service to help improve the timing of specimens arriving at the regional laboratory located in Massachusetts. The Newborn Screening Program continues to train Fellows and Family Visitors to allow them to better educate parents on the urgency of newborn screening. The Newborn Screening Program will continue to work to educate more obstetrics/prenatal providers about newborn screening and increase the distribution of Newborn Screening brochures to these providers. One new condition, Spinal Muscular Atrophy has been recommended to be added to the Recommended Uniform Screening Panel for newborns. The Newborn Screening Program will work to build the infrastructure to screen for this new condition.
Rhode Island Newborn Hearing Program (RI-NBHS) - RI’s NBHS program is also known as RI’s Early Hearing Detection and Intervention (RI-EHDI) program. The focus of RI’s EHDI program is to implement a high-quality EHDI continuum of care, by ensuring newborns and infants throughout RI receive, and remain engaged in, appropriate and timely services, which include meeting the Joint Committee on Infant Hearing’s (JCIH) 1:3:6 recommendations of screening by 1 month of age, confirmed diagnosis by 3 months of age, and Early Intervention by 6 months of age.
RI has successfully expanded the existing EHDI Advisory Committee and has implemented a wider multidisciplinary committee with representation from various organizations. The overall goal of this expansion is to increase the knowledge and engagement of all EHDI stakeholders and discuss how to effectively contribute and participate in the EHDI system, while also stressing the importance of improving the outcomes for children who are deaf and hard of hearing. RI EHDI has identified a number of EHDI partners, pediatric health providers, families and other stakeholders willing to engage in a shared learning sub-committee to facilitate adoption and implementation of innovations within the RI-EHDI system at the community level. Sub-committees will be designed to provide an opportunity for stakeholders to explore improvement areas for systems issues, and to report updates and recommendations identified to the RI-EHDI advisory committee in order to achieve the 1:3:6 goals set by the JCIH in each community for parents of children identified with a hearing loss.
The Newborn Hearing Program has sustained and improved its successful universal newborn hearing screening and follow up efforts in FY 2018. This was accomplished by ensuring that all infants born in the state of RI are provided with a continuum of care from screening to Early Intervention services. Using quality improvement methodology addressing follow-up, audiological reporting, home birth population and border babies, RI continues to improve NBHS lost to follow-up rates. Specifically, the RI EHDI program conducted a continuous quality improvement project focused on decreasing the referral rate for diagnostic audiological assessment. As a result of this project and changes in protocol, the referral rate for diagnostic testing decreased from 25.7% in 2017 to 14% in 2018. The reduction in diagnostic referral rate both lessened the burden on RI diagnostic centers and led to an improvement in diagnosis by 3 months (per JCIH 1:3:6 guidelines).
The Special Supplemental Nutrition Education for Women, Infants and Children (WIC) - The mission of WIC is to assure healthy pregnancies, healthy birth outcomes and healthy growth and development for women, infants and children up to age five who are at nutritional risk, by providing nutritious supplemental foods, breastfeeding promotion and support, education on healthy eating, and referrals to healthcare and critical social services. It serves roughly 22,000 women, infants and young children throughout Rhode Island, approximately 53% of the births in the state of RI, overall serves approximately 73% of the total WIC eligible population, based on the 2018 WIC State Plan.
A nutritionist, either BS, LDN or RD will provide client centered counselling, referrals and prescribe a food prescription based on individual needs. A care plan is developed with the participant and follow up occurs at least every quarter, some-times more frequently depending on the needs of the WIC Participant.
Prenatal women on WIC are provided education on breastfeeding and introduced to a WIC Breastfeeding Peer Counselor (BFPC). The BFPC will build a rapport with the participant, provide ongoing education and will promote and support breastfeeding. Any issues that exceed the ability of the BFPC are referred to an International Board Certified Lactation Consultant (IBCLC). WIC IBCLC’s round at the three largest birthing hospitals in the state, provide BF education, help with latch and any other issues and see only WIC participants or WIC eligible patients. The IBCLC will send their notes to the BFPC so the BFPC can follow up either at the clinic or while the client is home.
The WIC Program provides referrals and opportunities that help positively impact the health of the women and children. WIC collaborates with the RI Breastfeeding Coalition working on many topics from licensing IBCLCs to the Baby Café in Providence RI. WIC also collaborates with the following RIDOH Programs: Healthy Homes (to address lead exposure); PRAMS(to increase response rates); Diabetes Prevention program; Physical Activity and Nutrition Program; Oral Health; Health Equity Zones (farmer’s markets, breastfeeding promotion and support); Center for Emergency Preparedness and Reponses (community resilience); Family Home Visiting; Safe Sleep; and Tobacco cessation.
Zika Surveillance - The Center for Acute Infectious Disease Epidemiology (CAIDE) continues to conduct surveillance for Zika virus disease. Since February 2016, RI obstetricians have been instructed to call CAIDE and request testing when they identify a pregnant female who has spent time in a region with local-transmission of Zika virus or has another risk factor. When testing is requested, a public health nurse will review the CDC Zika virus testing guidelines with the provider and approve testing at the Rhode Island State Health Laboratory (RISHL), if appropriate. The nurse will then coordinate the specimen collection and educate the patient about strategies to prevent sexual transmission of Zika. If CAIDE receives any Zika virus laboratory reports from reference laboratories on females who are of childbearing age, CAIDE will follow-up with the provider to see if the female was pregnant, and if so, ensure appropriate testing was performed. If appropriate testing was not performed, testing recommendations are provided and Zika virus testing at the RISHL is offered.
Since February 2016, CAIDE has enrolled all pregnant females with laboratory evidence of possible Zika virus infection and their infants into the United States Zika Pregnancy and Infant Registry (USZPIR). Although the registry closed for new entries on March 31, 2018, CAIDE continues to follow-up on the infants born to registered mothers. Recently, the CDC received approval to receive follow-up information on infants up to 3 years of age and CAIDE will now be performing follow-up on infants at 2, 6, 12, 18, 24, 30 and 36 months of age. This is accomplished by reaching out to the infant’s pediatrician and utilizing the USZPIR Infant Follow-up Form to assess developmental delays and birth defects that may not have been evident at the time of birth. No pregnant females with laboratory evidence of possible Zika virus infection have been identified since the USZPIR closed for new enrollees, but if any are identified, CAIDE will continue to provide the same support and collect the same data as prior to the closure. CAIDE continues to reinforce Zika-prevention messaging when conducting public education about mosquito-borne illness and travel.
Rhode Island’s Perinatal Hepatitis Prevention Program (PHBPP) - offers comprehensive case management services to identify pregnant women infected with hepatitis B virus. The program recommends testing of all pregnant women during an early prenatal visit in each pregnancy, even if tested before or previously vaccinated. Healthcare providers are required to report all HBsAg positive pregnant women to the RIDOH. The Perinatal Hepatitis B Nurse refers for or provides HBsAg women with counseling, prenatal education and medical management. The purpose of educating HBsAg positive pregnant woman about hepatitis B include management of disease, prevention of transmission of disease to others and recommended prophylaxis (HBIG) at birth, vaccination and screening for infant. The program encourages all birthing hospitals to implement a universal birth dose policy, ensure universal review of the original maternal HBsAg test results, implement standard admission orders for timely administration of Hepatitis B vaccine to all newborn infants. After delivery, the PHBPP will track and follow-up on infants born to HBV-positive women including outreach to pediatric provider to ensure appropriate hepatitis B vaccination of infant and timely post-vaccine testing is completed and referral to the Pediatric Liver Clinic for follow-up care as needed.
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