the families of all eligible infants and toddlers with developmental disabilities and conditions likely to lead to developmental disabilities. Participants engaged in the program assessment discussed an array of challenges and opportunities on this topic. In particular, they emphasized the importance of having consistent and equitable processes. As a result of gaps in Part C EI outreach, referral and enrollment processes, some infants and toddlers who could benefit from services are not getting them. Providers and parents reported challenges for some families in navigating the process, particularly families with cultural and linguistic barriers who might benefit from more peer support. Participants also offered suggestions for improvement, particularly related to the connections from screening to referral to evaluation. Effective EI linkages to other systems such as early care and education, child welfare, and health are also important factors for outreach, referral, enrollment, and quality. Systems and process issues related to screening and referrals were identified for children in the child welfare system, those whose mothers are depressed, and those without a routine source of primary care (e.g. pediatrician or family practitioner). What does research say about this topic? Effective outreach, referral and enrollment: National data indicate that only a small fraction of infants and toddlers participate in Part C EI and that states’ eligibility, outreach, and enrollment processes have an impact on participation levels. Multiple studies of factors influencing family engagement in Part C EI have found that parents’ perceptions of their children’s development, practical barriers such as time off work or transportation, and the ease of connecting with program providers are key. Support for families in navigating and understanding the process from referral to further screening and assessment is critical. Without support through the Part C process, studies show between 20-35 percent of children referred do not receive an evaluation. These actions are particularly important for infants and toddlers who do not have a diagnosed condition
associated with developmental delays. (Decker et al., https://doi.org/10.1007/s10995-020-03067-2; Atkins et al., 2020 https://doi.org/10.1007/s10995- 019-02830-4; McManus et al., 2020 https://doi. org/10.1186/s12887-020-1965-x; Barger et al., 2019 10.1097/iyc.0000000000000151; Barger et al., 2018 https://doi.org/10.1177/0271121416678664; Hackworth et al., 2018 https://doi.org/10.1007/s11121- 018-0897-2; Twardzik et al., https://doi.org/10.1016/j. dhjo.2017.01.009; Barger et al., 2016 https://doi. org/10.1177/0271121416678664; Rosenberg et al., 2014 https://doi.org/10.1542/peds.2012-1662) Peer navigators and community outreach: Families, particularly those from culturally and linguistically diverse backgrounds, often face barriers in navigating Part C and the health care system without support, including a lack of understanding of the referral process. Family members with lived experience are increasingly being recruited and deployed to serve as peer navigators. Navigator roles typically include education, support, and assistance in accessing resources. Peer support has been shown to reduce stress and increase EI participation when infants have conditions that can cause developmental delays and disabilities. In addition, grandparents and other frontline community workers can provide support and facilitate connections for families. (Fratantoni et al., 2022 https://doi.org/10.1038/s41372-022- 01341-5; Pandy et al., 2019 https://doi.org/10.1080/ 08952841.2018.1444940; Reid et al., 2019 https://doi. org/10.11124/JBISRIR-2017-003958; Luke et al., 2018 https://doi.org/10.1093/pch/pxx176; Palfrey et al., 2019; Belcher et al., https://doi.org/10.1002/ddrr.137; Gooding et al., 2011 https://doi.org/10.1053/j. semperi.2010.10.004; Jimenez et al., 2011 https://doi. org/10.1016/j.acap.2012.08.006; Silow-Carroll, 2009) Maternal depression screening: Maternal depression can have serious consequences for both mother and child. Maternal depression affects parenting and is associated with social-emotional behavior problems, developmental delays, impaired cognitive development, and language skills among the
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