Welcome to the Fall of 2021 where much of the focus in Washington will be on reconciliation. If you recall, Democratic senators agreed to a $3.5 trillion reconciliation bill prior to the August Recess. Now begins the real work: what will be included. It is a massive bill--not just in terms of funding, but in what it hopes to accomplish. Based on Biden’s Build Back Better agenda, Democrats will try to include every major domestic priority on which they can agree. This bill will have a little of everything (for example, climate, jobs, immigration, medical leave, universal pre-k and childcare, etc.). Many are describing it as covering from the “cradle to the grave.” The deadline to put it all together: 9/15/2021!

Better Care Better Jobs Act (the home & community-based services (HCBS) proposal) and Paid Family Medical Leave have been outlined in past Washington Updates as proposals on the agenda for reconciliation. Below are just a few other components of the reconciliation bill that directly impact CYSHCN and their families:

Born of the Children’s Hospital Association Strengthening Kids Mental Health Now proposals, 2 bills have been introduced in the House by Representative Lisa Blunt Rochester (D-DE-AL) and Brian Fitzpatrick (R-PA-1) and are working to expand bipartisan support and inclusion in reconciliation. H.R. 4943 Children’s Mental Health Infrastructure Act establishes a HRSA grant to strengthen behavioral health infrastructure and expand capacity for pediatric behavioral health service delivery. H.R. 4944 Helping Kid’s Cope Act creates a HRSA grant to support better coordination and integration of community-based mental health services while expanding care options to improve access. Funding is flexible to allow communities to address their most urgent needs and includes training funds for the pediatric behavioral health workforce across disciplines.

The LIFT the BAR Act, to be introduced by Representative Pramila Jayapal (D-WA) and other co-sponsors, restores access to federal assistance programs like Medicaid, CHIP, and SNAP, by removing the five-year bar and other barriers that deny critical care and aid to people who are lawfully present. This includes people with “green cards,” Deferred Action for Childhood Arrivals, crime victims, COFA migrants, child maltreatment victims and orphans who hold Special Immigrant Juvenile Status (SIJS), and other non-citizens residing lawfully in the United States. 

For additional materials, visit this link. The Partner Materials and Resources section includes fact sheets and blogs explaining the history of the bar and how listing it affects specific populations such as families, farmworkers, essential workers, and survivors of domestic and sexual violence.

The Children’s Hospital Association has launched a national campaign highlighting the “perfect storm” of the impact of the COVID variant, rising cases of Respiratory Syncytial Virus (RSV), ongoing mental health demand, and staffing challenges that children’s hospitals are facing now. Follow this link for more information and to get engaged with your local children’s hospital.

Links to publicly available American Rescue Plan Act HCBS FMAP Increase Spending Plans 7/28/2021

Materials from the CDC, in English and Spanish, for people with ID/DD: COVID-19 Materials for People with Intellectual and Developmental Disabilities and Care Providers | CDC

ACL Policy Roundup newsletter with several items of interest: public charge; new CMS vaccination guidance for Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IIDs); exclusion of COVID benefits from income for determining SSI eligibility; and input on proposed Home & Community-Based Services (HCBS) quality measures.

This issue brief gives early findings from the most recent Kaiser Family Foundation (KFF) 50-state survey of Medicaid HCBS programs. Focused on changes and challenges brought by COVID-19, states were surveyed about HCBS provided through state plan authorities and waivers. Key findings include the following:

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Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families--including those of cultural, linguistic and geographic diversity--in order to improve healthcare services and policies for children.