This spring, in preparation for the Disability Policy Seminar (DPS) in Washington, DC, trainees engaged in a six-week policy module where they were immersed in the history and structure of federal programs serving children with special health care needs (CSHCN) and disabilities and their families. Trainees: 1) developed an understanding of the history and structure of federal programs serving children with neurodevelopmental disabilities and their families, 2) conducted an analysis on a key public policy topic and integrated findings into a policy brief, 3) learned to apply advocacy tools and strategies, and 4) educated policymakers with congressional delegates from New Hampshire and Maine. Trainees with advocacy experience enriched the group learning and family members prepared stories that exemplified the lived experience of Medicaid policy. The process was guided by an interdisciplinary group of LEND faculty including Alan Cobo-Lewis, Stacy Driscoll, Betsy Humphreys, Kay Johnson, Susan Russell, and Patrick Shannon.
Since 2017, the key policy topic for Congressional Hill visits by NH-ME LEND has been Medicaid. This is for several reasons. First, Medicaid is the main source of financing for services to CSHCN and disabilities. About one in five U.S. children under age 18 have special health care needs, with nearly half being covered by Medicaid. Second, Medicaid plays a primary role in financing home and community-based services (HCBS) which help to ensure that children can live at home with their families rather than in institutions. Third, because Medicaid undergirds and provides substantial funding or is linked to eligibility for other programs (e.g., Title V CSHCN, Part C Early Intervention, Part B Special Education, Child Welfare, Supplemental Security Income), it will directly affect LEND trainees across professional settings and family experiences. And, last but not least, Congress and state governments are continuously proposing and adopting policies that threaten or enhance the effectiveness of Medicaid in supporting CSHCN and their families.
A Zoom meeting screenshot featuring NH-ME LEND at the Disability Policy Seminar.
