By Lauren Blachowiak and Alyson Northrup, Association of Maternal & Child Health Programs (AMCHP) and Danielle Webber, Association of University Centers on Disabilities (AUCD)

Our nation faces a mental health crisis among children and youth that has been exacerbated by the unprecedented challenges of the ongoing COVID-19 pandemic. Limited opportunities for socializing, virtual learning, loss of family members, and uncertainty about the future have contributed to increased rates of psychological distress among the pediatric population.[1] These factors can be exacerbated and have an outsized impact for the one in six American children and youth with one or more developmental disabilities.[2] In this article, AMCHP and AUCD propose expanding the Centers for Disease Control and Prevention’s (CDC’s) “Learn the Signs. Act Early.” (LTSAE) program as one approach to addressing the mental health needs of children and youth with developmental disabilities.

The COVID-19 pandemic has underscored the dire need for access to appropriate, high-quality mental health services for children and youth with developmental disabilities.[3]  A December 2021 Advisory from the U.S. Surgeon General stated that youth with intellectual and/or developmental disabilities are among the groups at highest risk of mental health challenges during the pandemic.[4] Although social distancing, virtual learning, and other mitigation measures remain necessary to protect the health of children and youth with developmental disabilities—who are 1.6 times more likely to be hospitalized for COVID-19 than their peers without developmental disabilities—these precautions have also resulted in increased loneliness, stress, and mental health challenges.[5] Thus, behavioral health services must become more widely available to children and youth with developmental disabilities: to counteract the short-term effects of COVID-19 and to address long-standing systemic barriers to accessing these services.

LTSAE is a national program administered by the Centers for Disease Control and Prevention’s National Center on Birth Defects and Developmental Disabilities (NCBDDD). This program promotes the early identification of developmental disabilities in children ages 0 to 5 years by raising awareness of developmental milestones, encouraging early action on concerns, and promoting collaboration among early childhood programs and systems through 59 dedicated Act Early Ambassadors in almost every state and territory. An expansion of the LTSAE program would bolster federal and state systems supporting mental health care services for children and youth with developmental disabilities.

Using COVID-19 supplemental funds in 2020, LTSAE launched Act Early Response to COVID-19 teams in 43 states and territories to support recovery and strengthen resilience skills, behaviors, and resources of children, families, and communities during COVID-19 response, mitigation, and recovery efforts. In 2020, NCBDDD also launched the pilot program, Children’s Mental Health Champions, which is an adaptation of the Act Early Ambassador program intended to build capacity and connect state mental health services for children and youth with and without developmental disabilities across childhood and adolescence.

AMCHP and AUCD recently sent a letter to a bipartisan pair of U.S. Senators to formally propose a congressional authorization of the LTSAE program. At a funding level of at least $40 million per fiscal year, the LTSAE program could help mitigate the impact of co-occurring mental health conditions on children with developmental disabilities and their families, especially for those who are at highest risk of poor outcomes, such as children from racial and ethnic minority groups or low-resource families and communities. Congress has never formally authorized dedicated funding for the LTSAE program in statute, but NCBDDD allocates roughly $2 million per fiscal year to current program activities from the Autism budget line. A formal authorization and increased investment would enable CDC to sustain the work of Ambassadors and the Act Early Response to COVID-19 teams and expand the program to 70 states, territories, large cities, and tribal communities. It would also enhance Act Early Ambassadors’ ongoing efforts to integrate developmental monitoring, screening, referral, and linkage to intervention services into statewide child-serving programs, particularly programs serving children at-risk of developmental disabilities and delays due to systemic inequities driven by racism, ableism, and classism.

In addition, this proposed investment would allow the expansion of the Children’s Mental Health Champions pilot program to at least 50 states, territories, and tribal communities, creating a national community of practice similar to the LTSAE Ambassador program, through which best practices and effective strategies could be shared. These champions would improve monitoring, screening, referral, and intervention for developmental disabilities and mental health conditions (e.g., such as attention-deficit/hyperactivity disorder and depression) that can appear in later childhood and adolescence. They do so by training health care providers and educators, disseminating resources to families, and connecting the various systems serving children and youth with developmental disabilities.

Expansion of the LTSAE program is critical to supporting mental health services for children and youth with developmental disabilities. We welcome feedback from AMCHP members and partners on how we can refine and advance to best support the mental health of children and youth with developmental disabilities. We also are interested in other legislative suggestions or insights about legislative barriers we will need to overcome to better meet the mental health needs of this population. Please contact Lauren Blachowiak, AMCHP Government Affairs Manager, at lblachowiak@amchp.org with your input. You can learn more about the Learn the Signs. Act Early. program from the CDC.

[1] Murphy, V. H. (2021, December). Protecting Youth Mental Health: The U.S. Surgeon General’s Advisory. Office of the Surgeon General, U.S. Department of Health and Human Services.

[2] Centers for Disease Control and Prevention (2021, September 13). CDC’s Work on Developmental Disabilities (retrieved on October 28, 2021).

[3] Patel, K. (2020). Mental health implications of COVID-19 on children with disabilities. Asian Journal of Psychiatry, 54. https://doi.org/10.1016/j.ajp.2020.102273.

[4] Murphy, V. H. (2021, December).

[5] Tinker, C., Cogswell, M., Peacock, G., & Ryerson, A.B. (2021). Important considerations for COVID-19 vaccination of children with developmental disabilities. Pediatrics 148(4). https://doi.org/10.1542/peds.2021-053190.