Emerging Practice

Connecting Families to Supports through Service Assessments

State/Jurisdiction: Rhode Island
Setting: Clinical Community
Population: CYSHCN Infant
Topic Area: Primary & Preventative Care Care Coordination Birth Outcomes
NPMs: NPM 6: Developmental Screening NPM 11: Medical Home NPM 15: Adequate Insurance

Per legislation enacted in 2003, the Rhode Island Birth Defects Program (RIBDP), located in the Rhode Island Department of Health (RIDOH, is required to assure children with birth defects up to the age of 5 are receiving appropriate services and referrals in a timely basis. In 2005, the RIBDP, along with its Birth Defects Advisory Council (BDAC), determined the best way to accomplish this would be to conduct an assessment with families of children with birth defects to identify the services and referrals they received. Service assessments are currently conducted with families of children who have Down syndrome, spina bifida, craniofacial defects, critical congenital heart defects, abdominal wall defects, hearing loss, and microcephaly or other central nervous system conditions (added when Zika became an emerging concern). Condition-specific forms were developed to ensure children’s different medical, educational, developmental, and support service needs were being met. The assessment forms were also translated into Spanish, based on language spoken among the affected children and their families. The key population our practice impacts is children with selected birth defects and their families. The RIBDP, in collaboration with RIPIN, employs a Community Health Worker (CHW) who conducts service assessments with families who have children up to age five with specific birth defects to determine whether these children have received appropriate referrals and services on a timely basis. The CHW meets with families at pediatric and specialty care practices that serve children with birth defects or mails forms to those families who cannot be interviewed in a practice. Starting in 2021, the RIBDP added the option to complete an assessment via a secure online form. Follow-up service assessments are conducted to ensure continuity of referrals and services until the child is five years old. Service assessments help the RIBDP determine what services and referrals were provided to children based on the national guidelines for specific conditions. The CHW can also refer or recommend services to families when there is a gap.

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