The Family Navigator Program (FNP) is designed to help families navigate the complex system of services available to people with intellectual and developmental disabilities (I/DD), chronic health conditions, mental health issues, and other special health care needs. Based at the Mailman Center for Child Development at the University of Miami, the FNP is free and available to all families in South Florida. Most families enrolled in the FNP are receiving medical services from a university clinic; however, the program also accepts referrals from outside agencies and self-referrals. The aim of this study was to investigate the needs of families enrolled in the FNP before and after March 2020, when stay-at-home orders were put in place to address the COVID-19 pandemic. One hundred forty-five families enrolled in the FNP between November 2019 and mid-March 2020 were selected as a pre-COVID sample to be compared with 197 families enrolled from mid-March to September 2020. Families were deidentified, and data on demographics and specific needs were extracted. Demographics included race and ethnicity, language, age group, zip code, and disability or medical condition. Specific needs were defined as (1) topics on which families required education and (2) resources to which families were referred. There were no statistically significant differences in demographics before and after March 2020. There was a significant increase in referrals to financial resources during COVID (OR= 3.019, 95% CI [1.445-6.308]). There were also significant changes in the number of families provided with education on the following: increases in federal and state programs (OR = 2.156, 95% CI [1.306-3.560]) and other miscellaneous topics (1.902, 95% CI [1.081-3.348]); and decreases in school systems (OR=0.531 CI, 95% [0.328-0.858]) and therapies (CI, 95% [0.345-0.825]). These differences likely reflect the economic and social toll that the pandemic has taken on families caring for individuals with IDD and special health care needs in South Florida. Families’ priorities shifted from school and therapy to economic needs. The FNP adjusted by administering services by telephone or online, rather than by in-person meetings. These data provide a snapshot of how the needs of families changed during COVID-19 in one diverse, urban community.

Plain Language Summary

The Family Navigator Program (FNP) helps families of people with disabilities. The FNP is free for all people in South Florida. Families who work with the FNP are usually sent by their doctors, therapists, or friends. In this project, we looked at changes during COVID-19. Quarantine began in the middle of March in 2020. We looked at race, language, age, and disability for each family. We also looked at needs. Needs were topics that families wanted to learn more about or resources that the FNP told families about. We found no difference in age, race, or language before and after March 2020. During COVID, more families wanted help with money. More families also asked about government programs. Families asked less about school and therapy. These results help us know the problems of our clients during COVID. Families needed to focus more on money than school or therapy. This study shows how needs changed during COVID in one diverse city.

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